Wednesday, June 18, 2014

Ten months

Ruby is ten months. She is such a little mover, this was literally the best picture of her with her ten month sticker out of about thirty. This little lady can't sit still. What an incredible blessing. 
Ruby is hilarious. She use to love to say no, but that has turned to saying Yea, or yesh (yes) She is extremely attached to her mama, and will cry with just about everyone else if left alone for a few minutes. She is getting so close to walking. She can stand up on her own and balance for at least half a minute. She still does her funny scrunched up face, or her pirate face as her daddy calls it. She loves to swim just like her big sister and has even started to laugh like Lila. Its sort of like a sucking in noise while laughing . Maybe she learned it from her visits with Lila. 
Little Rue has seriously been my saving Grace. I now know why I was always panicked about not having more children and the need to have a child when Lila left me. Ruby is the only reason I can get out of bed in the morning. If I didn't have her life would be very very bleak right now. I think Lila knew me and knew that and patiently waited to have Ruby come and be with me. 
We love you precious gem

Thursday, June 12, 2014


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 27th 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……

Saturday, June 7, 2014

The funeral

Lila's funeral was beautiful. It was the hardest day of my life but it was filled with love and rejoicing for our little girl. My friends had the great idea to have a photographer come and capture all the details. I am glad that she did. You can really feel the emotion in these images. Even though they are hard to look at I feel blessed to have them.

Quinn's family made a beautiful memorial for Lila that had two gorgeous trees covered in our little lady's pictures.

My family decorated the tables with pictures of Lila. I am so grateful I took so many pictures of my girl. My sister and Dad spent a ton of hours compiling and putting pictures together for her funeral video. We had about 1300 just for the video! Lila was loved. 


This is our pediatricians nurse. We had lots and lots of phone calls between us. We are so grateful that they loved Lila the way that they did. She had such wonderful care.

The Jackson family put a bracelet that they made for Lila on her wrist before we closed the casket. 

putting on her tulip necklace.

Sweet Gracie really was Lila's best friend. I cannot wait to watch that reunion. 

The grandmothers saying goodbye

These are the last moments of our family together before they closed the casket. Words cannot express my grief. I cried out No! No! No! over and over. I thought I was going to faint. Every ounce of me wanted to crawl into that small coffin with my daughter. To snuggle in tight and quietly go to the other side with her. I couldn't fathom my hands never being able to touch her face again, to smell her hair, to gaze at those long eyelashes. Thank goodness for Quinn and Ruby holding me to this world. For reminding me that my time has not come yet.

Sisters whose bond will not be broken by death

It astounds me that one can survive so much grief, how can a heart keep pumping when it is shattered?

A final kiss from her daddy

This is the worst moment of my life. Quinn was literally holding me up. The last glimpse of my baby's face until I meet her again on the other side, 

How lucky am I to have an amazing partner. Who loves me even in the depths of despair. 

 We released balloons in Lila's honor and hoped that she saw them from heaven.

As I sat at the funeral with Lila's coffin before me I realized that she had tiny angels in the corners of her casket. I loved it. My tiny angel.

Nichole had lost her baby James to Vici syndrome

Rest well my girl and think of your family. Dream of the moment we will be in each others arms once again because I know that I will every moment of everyday.

I carry your heart with me, I carry it in my heart, I am never without it.
anywhere I go you go my dear and whatever is done by only me
is your doing, my darling
I fear no fate, for you are my fate, my sweet, 
I want no world, for beautiful you are my world, my true
and it's you are whatever a moon has always meant 
and whatever a sun will always sing is you
here is the deepest secret nobody knows 
here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows higher
than soul can hope or mind can hide
and this is the wonder thats's keeping the stars apart

I carry your heart, I carry it in my heart 

-e.e. cummings-