happy birthday Lila

Lovely Lila
Happy fourth birthday. I really thought you would be here with me today. On your third birthday I had no inclination that it might be your last. I was always very nervous about the age of three because that seemed like when a lot of vici children passed away, but once we hit that milestone I thought we were free and clear for a few more years. I never thought I would be crying by your grave this morning.
My dearest, oh how I miss you. I ache for you. I feel as though I am trapped in this horrible alternate reality and I am searching how to get back to you. A world without you just cannot be possible. How can my heart continue to beat without you? You are such a huge part of my soul that I didn't think we could ever be separated. You are more than a daughter. You are my best friend and the one who gave me the most comfort. As I think back on the last four years it was you who could lift me up and give me the most ease to my heart. I need you now. I need your half smile and full body laugh to lift this heavy burden of grief. I feel as if I am drowning and I am reaching for your hand in the depths. I can't seem to find it as I panic and desperately grasp.  This feeling is all consuming. I am trying to fight though, fight in your honor since you were the best little fighter that their ever was.
This last year has been a struggle, yet it has also been joyful. So many wonderful things happened. First, your little sister and namesake was born. Oh how you loved her. You would snuggle in close and smile at every little noise that she made. You loved it the louder she got and would laugh when she would cry. There were so many times that you two would be laying next to each other and you would be laughing and kicking with happiness. I am so glad that you two got eight months together. Unfortunately when Ruby was born was when your little body started to struggle. I think you were patiently waiting for her to get here and once she did you knew it was time. Thank you for staying the eight months. Thank you for letting me still be a mother. What a tender little mercy. If I didn't have Ruby to help me get out of bed I would truly be lost. You struggled through multiple hospital stays, different IV antibiotics and fluctuating electrolytes. I still don't know how you did it. I remember one particular hospital stay when they had kicked us out of the room to put your line in, when they finally let us back in I was horrified to hear you whimpering, you never complained. I quickly started to comfort you and your tiny swollen eyes opened just a crack as you looked at me then quite miraculously you smiled. A tiny crooked smile, just enough to let me know that you were aware of me and my love for you. What an amazing little girl you are. I am so proud of you. So proud of the fight your led.
We did lots of fun things during times that you were feeling alright. We swam in St George, played with cousins, spent time in the beautiful mountains. You were an honorary member of a little league team, the cubs of course. We spent quiet nights at home reading books, playing with glow sticks, lights and toys,  cuddling, listening to music and of course dancing. You were sleeping beauty for Halloween and I have never seen you so excited to wear something. As soon as I put you in that fluffy pink tool gown you were thrilled, smiling, laughing and kicking. It was so fun for a mom to watch.
This year found us on the move. We wanted to move into a home where your room could always be near me and where you could grow older with more room for ever growing equipment and supplies. We found a house in a school district that had a great severe special needs program and even a pool for your tight and strained muscles. We moved in with Grandma and Grandpa Thomson while daddy worked so hard to remodel and make it perfect for you. So you had two extra people who loved to cuddle you and give tons of love.
This year found you sicker than usual which meant a lot of down time. It was nice because Ruby was not mobile yet so we would all snuggle together and play. I guess I would say the last year of your life was spent snuggling, which is not a bad way to spend precious moments.
While cuddling you discovered sesame street on the ipad and you loved it, especially Elmo. Every time that furry red monster would come on you would light up. I will forever be an Elmo fan.
We met new friends. New Vici children whose life spans ranged from just a few weeks to nine and still alive! I guess that was why I was so shocked that you were leaving me at three. I thought we just might be that incredibly lucky few who beat the vici odds and had a ten year old.
I did start to notice that this last year seemed to be much harder for you . You rarely chewed on your fingers or "talked" anymore. The suction machine was our constant companion. Turning your head from side to side was difficult and you definitely preferred laying on your right which made your little ear stick out. Your legs were more swayed to the side and starting to get stiff. Therapists had just started to fit your arms and legs for braces and the muscles in your back were always in knots. I worried constantly about your comfort and asked the doctors if you could be on a muscle relaxant. They told me no because they were worried about your breathing and heart.  It frustrated me because I felt like I was watching you suffer and there was nothing I could do about it. Through it all you taught me how to endure all things well. Not ever complaining until it was beyond your breaking point. I pray that Heavenly Father was with you in these moments, carefully seeing you through the pain.
Lila you have brought miracles into our lives. During your short life and since your death our family has received beautiful acts of kindness. Acquaintances and even strangers have grown to love you and our family and have reached out to offer love and support. It has touched my heart and made us feel so special. I fear that we will lose that special spirit in our home. Its ironic that in the beginning of this journey I never wanted to be a special needs mom. I just wanted to be blissfully ordinary, now I am grieving over the fact that we are only ordinary and our special spirit in no longer in our family.
In April we finally moved into our new home, on a quiet little street in Holladay I pictured us swimming and walking to the little shops a few blocks away. We spent a few weeks exploring our new home before you were far to sick to take out. At  your final hospital stay the doctors told us we could take you home since it was viral and there was nothing more they could do for you. Since your passing I have had a ton of guilt as to if I should have taken you home but I am coming to see this as an answer to prayer. For the past six months of your life I plead with Heavenly Father to not make me make the decision on whether or not to keep you in this world. I know that I would have always chosen to have you with me. How could I not? And I never wanted to prolong your pain if it was your time to leave.  I see that it was a mercy to have you home, in our new home, where I will never leave, and have you pass peacefully in your spot. Your final Sunday on this Earth was Easter and your dad and I took the sacrament in your  hospital room. I cannot describe the overwhelming feelings of comfort I had as I took that bread and water. I felt so strongly that we were an eternal family and that we would be together forever.
The night before you passed, my love, I asked daddy if this could be it. I felt like maybe your time was coming but at the same time you had always rebounded from whatever sickness was thrown your way. I feel blessed that you slept in bed with me that night. That I could be there to help clean you up after being sick and cuddle you into my arms again. I feel blessed that your last moments on this Earth were not spent with loud alarms and doctors running in and out but peacefully listening to your parents, dog and sister. I feel so incredibly blessed that I told you just how much I loved you. That I got to hold you and tell you that if you needed to go that you could. I will be forever grateful to know that those were the last experiences that you had in this world. I am blessed to know that you only knew of love pure and unconditional.
Happy birthday my dear. My forever four year old. I think of you with a strong and perfect body surrounded by family and other admiring souls. I am jealous that they are in your presence tonight but I rejoice with the knowledge that I will be there as well someday. I hope that you think of me and miss me just a tiny fraction of how much I am missing you. I hope that you long for the day that you can hug me and finally say the words that I have been desperately waiting to hear. I hope that you are looking forward to it as much as I am, for it is the hope of that moment that is pushing me forward everyday. Please know this my sweet that we love you, that we miss you every moment of every day. Please know that you will always be a part of this family. You are my embodiment of Heaven and it is more wonderful than I ever thought possible. Until we meet again my gem.

-your eternal and ever loving mother