A love letter to Lila on her first birthday

Dearest Lila
A.K.A Lila bear, little miss, love bug, stinker, stinky, stink ba dink (just because you think the word stinky is funny, you actually smell rather wonderful) my sweet, bubba, angel baby, lady Lila, love monster, teaser, princess, and so many more.....
Happy first Birthday!!! One whole year old. Wow! It has seemed like the longest and the shortest year of my life. Filled with some of the highest highs and lowest lows. What an adventure.
When I was in the hospital and the doctor broke my water and we knew that there was going to be a complication I just started to pray. I begged Heavenly Father just to give you to me for at least a year. Give me all four seasons, give me time to love you. I am so blessed that he did.
When you were taken from me to go to the NICU your daddy and I thought that that was so tragic and discouraging, little did we know that it would only be the beginning to a long and arduous road. With each new discovery on how you would be different our hearts broke just a little bit more. We want so much for you, we want you to be able to experience all that there is to experience in this life. Love, faith, joy, discovery and pain. Little did we know that you would be, and are, our biggest teacher.
I thought at one year we would have the answers to how your life would look health wise, but it seems we are still stuck in the dark with far more questions than any answers. It's hard for me. I am so sorry that I tend to dwell in the future instead of enjoying your perfect and sweet present. Your daddy is so good at not asking the "what ifs" and I am trying to learn from his sweet and hopeful example.
Never has there been a more perfect and sweet little angel. I have never known another living soul that is either content or happy. I remember when you were a few months old and I had yet to see a social smile. You were sleeping in my arms and you smiled in your sleep. I just broke down, I prayed that I would see that smile one day in response to me. Now you give me one practically everyday. A few lucky days (like today in response to your first bath in quite some time) I even get a laugh. During these moments I have never felt so much joy. It feels like my heart is not big enough to carry it all. It is a little glimpse of heaven and I treasure them.
Lila you are enchanting, you are special. You made me a mother so I have nothing else to compare you to but I know that you are one of a kind. You touch hearts. Never has a room filled with nurses and doctors so quickly wanting to drink you in, or grandparents, Aunts, Uncles and cousins so willing to hold and to love you.
I had an experience in high school where I came out and told my mom that I knew I would have a child with special needs. Over the years I have tried to convince myself that it wasn't true but you came and I know that you were meant for your daddy and for me. At times I forget it and throw myself a pity party but your daddy is quick to remind me. Yesterday as we were walking in the mall I told daddy how hard it was to see parents and their perfect, healthy children. Your dad quickly agreed, he said it was hard to see them too because he felt so bad for all of them because they didn't get to have you in their lives. We are truly lucky to have you.
I love you Lila. You are the most wonderful and most beautiful part of my life, you and daddy. I am grateful that you gave me the gift of being a mother. I am grateful for all the other lessons that you are teaching me, even though they hurt, and it is by far the most pain that I have ever felt. I know you are pushing me to be better, to be able to deserve my family. I don't know what is in the future, I don't know if you will ever walk, talk or even really be able to see me, but I do know that we love you so much. That whatever comes we will face it together. "I took you by the hand and we stood tall." Love you little miss. Happy Birthday!!!
love
your mama