Lila's tree

Lila's favorite holiday tradition was snuggling under the Christmas tree. The day after Thanksgiving we would always get our tree, put it up and gaze at the twinkling lights. This year we brought the tree to lila, so she could still lay beneath her beloved tree.

Thanksgiving.

I have always loved thanksgiving, especially the last few years because it has allowed me to take a step back and be extremely grateful. No matter what stage of the last four years we were in I could always take a day to say that I was grateful for all that I had.  This year I am struggling. I do feel extremely grateful that Quinn and Ruby are in my life, along with my amazing family and friends but a large cloud has covered the day. Lila is no longer here. Last thanksgiving the girls all stayed home while Quinn went to dinner because Lila was too ill to go. I know that this thanksgiving she is so happy that she is not sick on my couch but I would gladly take her. I know that it is selfish, I know that wishing her back in a broken body is wrong but I can't stop from wanting her here today. The house is quiet, Quinn and Ruby are taking a pre dinner nap and all I can do is imagine that I would be snuggling Lila close and tickling her back, telling her how beautiful she was and she would let out a little sigh and look at me from under her lashes and give me a small side grin. I feel so incomplete without her. I need her, the wait to see her again feels unbearable. So instead of being swallowed by that dark monster called grief I am going to remind myself all that I got to experience.
- Lila lived, she lived past that horrible stay in the nicu somehow managing to live even while swallowing milk into her lungs.
-Lila smiled. I remember sitting on my couch crying and pleading with the Lord to give me one interactive smile. Just one, and when her life was all said in done I had had hundreds. Hundreds of beautiful, sweet smiles that were in response to my voice and laughter.
-moments of pure clarity. There were times when Lila would look straight into my eyes and see me. It was as if her disability was taken away for a moment and she could actually communicate with my soul. She would always give me a smile in these moments and it was a different smile, a reassuring, all knowing kind of smile, one that let me know that she was in on the plan.
-Doctors who saved my girl more than once, a children's hospital twenty minutes away from my house. Who knew that having Primary's so close would mean more precious time.
-laughter. full body, all consuming laughter. Lila could laugh. Her whole body was in on it. It could be random or very deliberate. I loved when she would laugh in response to her daddy's teasing.
-the knowledge of angels. I know they were with her. I know she saw them in the brigham city temple. I have never seen her eyes so bright or a longer smile. I know they filled my home the day she passed. I know they watched her at night when the sleep deprivation got the better of me and I didn't "feel" Lila wake up.
-Lila got to be a big sister. This was one of the greatest miracles of all. Lila and Ruby had a sister. They played together and loved each other. Laying next to each other both would always hold onto each other and smile and laugh, Ruby before it was expected to of babies. They loved each other so much and I know that will be a bond that wont be broken.
-we still got to have adventures.  Lila swam in the ocean and in swimming pools. She had cousins bury her feet in the sand. She took a plane ride. She hiked in our beloved mountains and watched fireworks in my arms. She ate cotton candy and had birthday parties. She went on train rides and floated down lazy rivers. She had sleepovers with her best friends. She wore matching Halloween costumes with her bestie. She snuggled under Christmas lights and cheered on daddy's teams. She talked with grandma and grandpa. She dressed up in Princess gowns. She had cousins argue over who got to sit by her.  She went to summer baseball games and BBQ's. She had her first kiss by the neighbor boy.  She took long walks and had dance parties in the kitchen. She held her baby sister.
-Lila waited till we were at home to pass. I worried about how the end would be. If I would have doctors shouting at me to make a decision. If I would choose to crack her chest and cause her pain. But instead she left this life has she lived it peacefully.
-I am grateful for those final sweet and sacred moments with my little girl. How I felt inspired to tell her just how much we loved her, that the last words on this Earth that she heard were full of love and gratitude towards her. That she choose to leave only after her mother told her that if she had to she could. She is my hero and my greatest example of strength.
-Lila's spirit. anyone who got to know her knew just how brightly she shined. She was a giant in a small body. Her quiet and immobile self could fill the room. You would walk in and just feel her. She was amazing.
- 45 months. I am grateful for 45 miraculous months. filled with joy, love, heartache and peace.
-comfort. how in the midst of all of this i can still feel at times the same way as I did with her in my arms. I now just imagine her holding me.

Lila- happy thanksgiving beautiful girl. I know you feel so much better this thanksgiving than last, to which I am happy for you. I wish you were here to love on. It doesn't feel like the holidays without you. I miss you so much. I know that you couldn't stay, life was getting so much harder for you but I want you to know just how thankful I am for you this day. I am thankful for your loving example. I am grateful for all that you did for me. You have been patient, loving and understanding. We miss you. Have a wonderful thanksgiving.

First snow

Children's museum

It's crazy that just going to the children's museum can fill me with so much gratitude. I never thought we would be the kind of family who got to got to go to those  kind of places. It was amazing to watch ruby play. A miracle.

She was so funny in the gift shop. She just rolled around with the doggie. 

More giraffe

I realized I hadn't posted our trip to see lila on Halloween. Ruby wore lila's giraffe costume this year. It made me miss her  terribly but it was so nice to see it being played in.

Gone from my sight- Henry Van Dyke

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, “There, she is gone”

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me — not in her.
And, just at the moment when someone says, “There, she is gone,”
there are other eyes watching her coming, and other voices
ready to take up the glad shout, “Here she comes!”

And that is dying…

grief

Quinn and I joined a grief group for parents that have lost children. Its been hard and also good to listen to other parents talk about their experiences. Our children have all died from something different and Lila was the only special needs child, but it is amazing how much we are all experiencing the same difficulties. How anger, agony, depression, sadness and despair can come out of the blue and crush you. Even at six month later I keep hoping to wake up from this nightmare. Its hard because at six months we are now use to taking care of just one child and that in and of itself hurts. I am a mommy of two beautiful girls, I want to be dressing two girls, feeding two girls and playing with two. The fact that I am used to only one means that time is passing and I am getting further and further away from the time that I had with Lila. Its devastating and while Quinn and I put on a good face I am broken inside. People tell me that they think I am handling this all so well, its because my grief is too sacred to share. Even on this blog that has for so long been a source of therapy its hard for me to even describe what we are going through. So therapy has been nice. As I hysterically sob and struggle just to say Lila's name no one is shifting awkwardly and trying to come up with some comforting words, we all feel broken, there are no words of comfort. Our children are dead. We are everyone's absolute worst nightmare. But together we understand each other. We know what its like to wake up in the middle of the night and wish that we could fall asleep fast because in our dreams we are not living this horrid reality. We know how much it hurts to see a child that is the same age as ours running and enjoying life or how in the middle of a busy halloween party the sight of a child in a wheelchair can induce such violent and loud sobs that we have to hide in an alley between two buildings as to not alarm small children. This is my reality.  This is the world in which I find myself, struggling to navigate my way through and yet I know that I must. Somehow at the end of all of this is a little girl who is waiting for me. If I can just get to her, get all my family there we can be complete again.

Candy

Ruby has been obsessed  with her trick or treating candy. The only word we hear from her lately is more

My sleeping beauty

Oh how I ache for you 

My little giraffe

Ruby second Halloween was quite the success. We went up to Park City and trick or treated on Main Street. There were thousands of people and dogs dressed in costume. It was a little one year olds dream.
This holiday was much harder on me than I thought it would be. There were several times where I had to stop and take a moment And cry. I sure miss my sweet little Lila. I miss dressing her up for Halloween. I miss that little laugh that she had when I put it on her Sleeping Beauty costume. Sometimes it's all too much. I feel very empty sometimes. Thank goodness for Ruby or this holiday would have been unbearable

Trunk or treat

witches at gardner village

Trick or treating to grandma