I thought I would post mine and Quinn's talks from the funeral. Just in case you were not able to attend.
My talk
On July 27
th 2010 my husband and I welcomed the
most beautiful baby girl into the world. I was stunned by the amount of love
that consumed me at seeing her face for the first time. She looked like an
angel with white blonde hair and big blue eyes framed by dark lashes. She was
perfect and I never could imagine being so happy. My heart was so full I felt
like I had received my happily ever after
from my Heavenly Father and I would thank Him several times a day that I
had this wonderful little family.
But as the weeks went on Lila didn’t start to hit milestones
I feared that something might be wrong. As we saw specialists at the children’s
hospital we were told that she had some abnormalities, such as cataracts in her
eyes, a missing part of her brain, the inability to hold her head up, to
support herself and more. We were told something might be seriously and
irreparably wrong with her. I remember
sitting in the hospital room as a nurse told me that Lila could still have a
fulfilling life as a disabled individual, silently screaming “No” in my head.
This is not my life. I follow the commandments, I accept callings, I attend the
temple, and Heavenly Father looks out for me. I struggled as the weeks and
months went on to find a loving Heavenly Father. I never doubted he existed but
I could not see how he could ever have loved me or how he could put such an
incredible little girl in this broken body.
As the months ticked
on I knew a miracle was not going to happen for my little girl. When the diagnosis finally came almost a year
and a half after her birth I had already prepared myself that my beautiful
angel would never see adolescence. My
daughter s terminal and genetic condition was called Vici syndrome. She never progressed pass a
few months old, she never walked, talked, or
called my name or even saw me very well. Her little and broken body
struggled just to exist. Breathing, regulating temperature and slightly sitting
were all work. Watching her struggle has
been the biggest trial of my life. I have never felt more hopeless. We have
loved her fiercely, worked with her daily, suctioned, tube fed, attended
therapies, controlled seizures and tried to make her as comfortable as possible
and after all of this we have seen her into an early grave.
I have struggled with
my feelings of anger, self-pity, and feelings of unfairness over the years. How
could I ever imagine what this little girl would teach me? As she patiently dealt with her struggles she
was quick to smile and laugh. In tune with those around her she was even
quicker with her smiles on the days that were a struggle. Who could ever have foreseen that in my life
it would be my three year old that would teach me more about patience, long suffering
and enduring your trials with a good attitude more than anyone I would meet in
my life. I would not learn these
attributes by dealing with her tantrums but by following her example. Her sweet
spirit was felt by most and comments on the peace that she brought into a room
were common. Strangers would hold her and tell me that they felt closer to
Heaven in that moment than they had in a long time.
And then a funny thing started to happen, this dreadful and
heartbreaking trial, this tragedy that had happened to me, started to become
one of the biggest blessings of my life. Believe me, I kicked, screamed and
tantrumed the whole way through. Resolute that I would never accept being a
special needs mom. But as time went on and Lila patiently showed me what an
incredible daughter of our Heavenly Father she was I knew that not only was she
a blessing in our home, we were the incredibly lucky ones that she had chosen
to see her through her short and difficult mortal journey. I now wear my “special needs mom” badge as an
honor and a humble calling.
Lila has taught us about our Savior and for a Fathers
desperation to see his children home. Watching Lila suffer I have come to have
a deeper love for a Father in Heaven who would sacrifice his son for me, for I
would have gladly given my own life to see her healthy. I can not imagine a greater struggle for our
dear Father than watching his beloved son suffer unimaginably, to hear him call
out “abba” (or an intimate term for Father) remove this cup from me, and for our
Father to stay the course, knowing it would be the only way to see the rest of
us home, and for us to be eternal families.
We have come to have a greater understanding of the plan of
salvation. No longer is the idea of a Heaven a far away ideal. We dream and
talked often of how it will be to have our dear and sweet daughter waiting for
us when we depart this world. I imagine her untried legs strong and true
running to greet me. She will finally look into my eyes and tell me she loves
me. And in that one and sweet moment I know that all of this will be worth it.
Every doctors visit, ICU stay and sleepless night will be a long ago and
forgotten memory and I will never again have to say goodbye to my Lila..
I see now that there is a plan for me, I do have an eternal
family. I am so grateful for a partner who has an incredible testimony and the
strength to have been a strong father to a special baby. Watching Quinn raise Lila has been a
privilege. He is an astonishing father who never saw her as anything but his
beautiful daughter, perfect in every way. He has taught me how to live life
through unimaginable sorrow and not only to survive it but to thrive. He is my
rock and I am grateful every single moment that he is by my side in this.
I know that Heavenly Fathers weeps with us. He is saddened
by our struggles. I have learned that he is not a far away, non-involved deity
but an aware and loving Father. He knows that through our suffering we will
become more polished, more patient, loving and kind. We will have more sympathy
for our brothers and sisters, be better parents and spouses, better children,
our best selves. And in that one sweet moment when we can run to him and he can
look us in the eyes and tell us he loves us it will all be worth it, the trials
of this world a long ago and forgotten memory.
A fellow special needs mom once said, “Yes, I may have had
more than my fair share of trials but I would also have to argue that I have
seen more than my fair share of miracles.” I love that. Lila has brought more
than our fair share of miracles. I stopped counting the times that she had
gotten sick that I thought she wouldn’t make it through. She stayed and blessed
my life and those around her even though it was getting increasingly difficult
just to exist. I have seen her touch lives and soften hearts. Even those that
have gone cold with hate and regret were warmed in her presence. I have seen
dear children become caretakers at a young age who wanted to serve her in any
way that they could. My sweet nieces and nephews especially have fallen in love
with her and were quick to soothe her after a seizure or let me know if she
needed suction. I feared that they would be afraid of her but they loved her
more than anyone. I have seen angels in my day to day life, mostly in the form
of my family. Our families have prayed for us and helped us, they have suffered
every blow with us. They have stayed at the hospital, listened to my panicked
phone calls, tried to help me see the light and above all have lifted me and
encouraged me to keep putting one foot in front of the other. I know I could
not have born this burden alone and I am grateful for a Heavenly Father who
knew that and gave me the support I needed.
Lila has shown me loveliness. Constant service has taught me
the beauty of true love. It has opened a chamber of my heart that I didn’t know
was there. My world revolved around another and therefore freed me from
thinking of myself. She has shown me how
blessed I am. For so many things but particularly for a working body and how
incredibly miraculous it is that my youngest also has a working body. I will be
forever grateful for that. I no longer take the little things for granted, long
gone is the idea that I was somehow entitled to happiness. This life is for
work, for heart wrenching moments, for loving what blessings you have and not
pining for what you don’t or what will never be. Its about finding the beauty
around you, for a little girls crooked smile and a full body laugh that is the
most gorgeous sound in the world. Lila has given me these gifts, I had hoped
that she will be here long enough to have given them to her sister Ruby but her
legacy will be forever lasting and I will teach her sister about the gorgeous
and stellar little spirit who was far too perfect for this world. Who I know
will wait for us in the next life with her beautiful and perfect body.
On April 26th 2014 I awoke to the sound of my
daughter breathing. Awake before me she again patiently waited for her mother.
I rubbed her back and told her how beautiful she was. I moved her to her spot
on the couch and she listened as the house awoke around her. Quinn kissed her
and told her he would see her later. Her little sister screamed and laughed and
her dog sniffed her for the millionth time. Then for some reason a thought came over me and I scooped
her up and told her just how much I loved her,
I started to cry as I told that if it ever got too hard or too painful
to be here than she could go. I kissed her sweet cheeks and spilled tears
into her hair. Her sister then became fussy and I let Lila know I would be
right back after I put her sister to bed.
She waited for me to leave before she took her last breath and left her
exhausted body.
My dearest little girl, Oh how I miss you.
The loss of you in our home is so
overwhelming. This hole in my chest is burning and no matter what I do I can’t
seem to dull the pain. I thought I would be less selfish, more happy that you
are dancing and free but right now all I can think about is your sweet light and
smile. I miss you, everything about you. I long to hold you and tell you again
just how much you are loved, but until that blessed day,
know this my sweet, I loved being your mother. You are my biggest blessing and
my proudest accomplishment. You made me a better and more grateful person. You
will never be forgotten. You will always be with me. I would say rest in peace
but instead I will say run, dance and laugh your big full body laugh. Use your
now perfect and beautiful body. And wait for me for I will see you soon.
Thank you to everyone who is here today. Thank you to our
wonderful family and friends, for everyone who loved Lila. And thank you to the
hillcrest ward for allowing us to come back here for the funeral . Lila has
touched so many lives we are grateful to celebrate this extraordinary life with
you.
Quinn's talk
I am a member of the Church of Jesus Christ of latter Day
Saints. We are in a chapel of the same faith. During my life I have made it a
point to get to know many who profess other faiths. Many of you are here today.
I desire that you all know, LDS and Not I have attempted to find Truth in my
words so that all may benefit from a spirit of love, the spirit of Lila. Our
hope is that Kristi’s and my appreciation is felt by each one of you today. For
what you mean to Lila and to our whole family.
I recently attended a business meeting out of state. I met
some incredible men and women and I have thought back to our conversations
every day since my visit. During my stay I realized I was probably the only
member of the LDS faith in attendance. My lifestyle was considerably different
from most of theirs. Which of course prompted questions. I was asked several
times if I was a Mormon. This usually led to some sort of discussion about my
life and my passions. Keep in mind many in the group are or have been competing
at the highest levels in most action sports. From skiing and snowboarding to
fishing, cycling, and climbing, these men and women were thrill seekers. They
take advantage of their time to reach for new heights. As we discussed what I
was passionate about I realized to my amazement, many agreed with me. We shared
the greatest adventure. Climbing the perfect mountain is amazing and taking the
perfect ride is great. However, that excitement is nothing compared to being a
parent. The rush of any extreme sport or financial triumph pales in comparison
to the rush of love when you see your little one for the first time or witness
her first smile. Every conversation ended with just how lucky we were to
experience parenthood. I feel that I had them all beat. You see I am Lila’s
dad. When I started to explain my perfect baby Lila people crowded around. I
was so pleased they could appreciate my passion for my girls.
During these conversations I thought back to a teaching I
learned as a youth in my home and in church called the plan of salvation. A
designed system laid out by a supreme being that will lead anyone to peace
while alive and a joyous return to that being. I have asked many their feelings
about such a plan and the answers vary as much as the people answering the
question. Some feel there is no plan while others grasp onto the idea that a
defined plan has been laid out for everyone. Still others are somewhere in
between. We can all agree the human race yearns for answers. That is why man
dives the deepest oceans and looks into the farthest stars or reads the best
books. We want to know who we are. Why we are here and where are we going? I
will tell you what Lila has taught me about me and how she has provided me with
a clarity I didn’t know was possible.
Kristi and I talked early and often about our desires to be
parents. I envisioned playing catch with my son and taking him to football
games. I envisioned my childhood experience with me being the dad this time and
a small version of me learning at my feet as I did with my dad. You can only
imagine my surprise when I was thrown a curveball. A girl! Dolls and painted
nails and giggly sleepovers and pink. How could I connect with a girl? What
would we talk about? I experienced cluelessness more than fear or nervousness.
Probably because I was married to the most prepared woman for parenthood I can
think of. Those in attendance who are parents know what I’m talking about when
you compare expected love prior to your little one coming and the actual love
you feel once they come. Words do no justice. July 27th 2010 I
became a dad as well as a total emotional wreck. I had never cried hard before.
Lila was amazing. She was tiny and helpless and innocent and she was my little
girl. I remembering feeling so much pride because she picked me to be her dad.
3 and ½ years later I had put diapers on backwards, cut her fingers while
clipping nails, dressed her in the worst outfits that involved bright Chicago
Cubs onezies and light pink sweats. I styled her hair like a surfer bum while
Kristi was out of town and she watched way more sports than any little girl
should have to. More than once after I was done yelling at the T.V. during a
game, I would look at Lila and find a probably embarrassed daughter but
definitely entertained one because she was smiling ear to ear. I didn’t ask for
Vici Syndrome. I just asked for her. And what I got was so much more precious
than I thought possible. What I got was utter perfection. Ask yourself how it
is that a girl who never said a word or never moved an inch on her own was able
to inspire people across the world. Now think about the fact that I got that
every day. During our time together, I have felt and thought about the fact
that my purpose while Im here is to be her Dad, to provide and to be taught to
protect and to be humbled. To truly learn how to walk the walk.
The unfortunate reality is Kristi and I were taught lessons
that we never thought ever to be subjected to. 3 ½ years later, after all the
seizures and surgeries, all the doctors visits and medications we are here. I
say unfortunately with reservation because just like many of you here who have
dealt with tragedy, we know there was always a double edge sword. On one hand I
lived with a perfect angel for almost 4 years. Her smiles are epic. Her full
body laughs penetrate you to the core. She seized moment after moment to let us
know she was just a happy little kid. On the other hand the stress of caring
for a terminally ill child is at times unbearable. The ER stays the needle
pokes the added medications and still worse sitting through exams where at the
end you are told nothing really can be done for your daughter are truly brutal.
Kristi and I had to make many decisions about what type of
life we would live and make a commitment to fight for that life knowing that
Lila’s situation would bring us to today. Which brings me to the Purpose of my
life. I subscribe to the theory that life is meant to be a happy. Joy is my only goal in this life. Kristi and
I have jumped out of planes together and backpacked through Europe. We have
laughed enough for 2 lifetimes. So then why is it that my Joy has shot through
the roof when Lila came? There were complications and hospital stays from day
one. She was a constant physical reminder of everything she couldn’t do and all
the dreams we had that were left unmet. And yet, after all of this I regard my
life as charmed and blessed and I have never been happier. Why would this be?
The answer is simple really. The only way to achieve joy and I mean true joy,
not the kind you see on T.V. or in the movies rather the kind that penetrates
your soul and leaves you virtually unable to put words to. That type of joy
only comes through love. I know the idea of Jesus Christ loving his brothers
and sisters so much that he gave his life so that we may live may be difficult
to wrap our heads around. What about a mother who brings a beautiful girl into
this world? She must give up career and hobbies and time oh so much time to
protect and her child. She is the one who shuffles her little one to Primary
children’s hospital for what seems like the 1000th time. She is the
one who flies her little girl to the Mayo clinic and holds her as they cut her
leg open or poke her arms and feet and hook her up to machines. She is the one
of gives to her daughter all of her gifts and learns new ones so that her
little baby feels loved and safe. If anybody here struggles with the idea of a
God who loves all of his children look no further that How Kristi loves Lila. I
have learned through Kristi’s example just how sacrifice brings joy. Just how
consecrating you talents for the benefit of others, allows you to more simply
put trivial matters and shallow ideas to rest. That acting with faith and hope
permits your life to be utterly an avalanche of meaning.
In today’s a world we seem to have so many directions in
which we are being pulled. We seek to understand our lives and put meaning to
them just as our ancestors did the difference being the prevalence of
information and options. We obsess over
the words success and control. Oh how would we love to control our lives?
Through this experience may I offer you my perspective on how we may define our
lives as a success? Gratitude. To be grateful for all I have been given both
good and bad has freed me to live my life without regret. I believe my greatest
moments of joy and peace have come in the face of adversity. What an experience
to have something going terribly wrong and come out the other end saying I am
better husband and father and person for what I have just gone through Everyone will experience loss. Failure is a
constant companion during our journey. Dreams go unrealized and desires aren’t
met. After all that the question remains. What will I do with the time I have?
How will I live your life worthy of Lila’s life and memory? How do I show
gratitude for every day that I have left?
Talk is cheap. I can sit here and tell you I will seize
every single moment I have left. I could promise that no day will be live
without accomplishing something monumental. But we know that would be a lie.
It’s part of the human experience to have these bad days. What I can do is hope
to be a little better and feel a little more joy living a life to the fullest.
I would like to propose a challenge to all today. We sit here together honoring
a little girl who never was able to enjoy countless routine and daily
activities. I would like to issue Lila’s challenge. Be a little more grateful
for the good and the bad. Serve our loved ones a little more diligently. Take a
little more note of each other’s accomplishments particularly our kids. Be a
little more passionate about our neighbors and communities. Take the time to feel the sun on your face.
Listen to the wind passing through the trees. I Challenge every one of us in
Lila’s name that we seek for joy.
I would like to finish with my belief about where love comes
from and visualization that I hope every carries with them. Simply pu,t I
stated before, love comes from God, and there is a quote that I have clung to
for some years now of what my maker hopes for me
“The gift of the Holy Ghost…quickens all the intellectual
faculties, increases, enlarges, expands, and purifies all the natural passions
and affections, and adapts them, by the gift of wisdom, to their lawful use. It
inspires, develops, cultivates, and matures all the fine-toned sympathies,
joys, tastes, kindred feelings, and affections of our nature. It inspires
virtue, kindness, goodness, tenderness, gentleness, and charity. It develops
beauty of person, form, and features. It tends to health, vigor, animation, and
social feeling. It invigorates all the faculties of the physical and
intellectual man. It strengthens and gives tone to the nerves. In short, it is,
as it were, marrow to the bone, joy to the heart, light to the eyes, music to
the ears, and life to the whole being.” Parley P Pratt
In closing, if you wouldn’t mind, I would like you to all
close your eyes and visualize what I see. I see a little girl. Three feet tall,
but somehow she seems bigger. Her long blond hair has been meticulously braided
and crossed over her head and pinned in the cutest style. It’s probably a
little tight but she doesn’t complain. She knows how her mom loves to do
it.
She is standing on her two perfectly
functioning legs. She is wearing a bright dress and shiny gold shoes, her eyes
drinking in the world around her. Her left eye slightly more green than her
right which is blue. Your eyes lock. There is a recognition in her face. Light
seems to escape her as she shows you a smile that stops time. She lets out a
giggle. Oh her giggle is pure and innocent! And she is off. So are you. You
have never ran so fast in your
life. Before you know she is in your arms. Her
arms around you so tight you can barely breathe and you don’t even care. You
spin her around and laugh. You laugh so hard your stomach aches. She leans in
close to your ear and you hear her voice for the first time and she whispers “I
Love You”
That is what I get to live for and look forward to……
