Tuesday, March 24, 2015


I feel like I've been trying to not fall apart.  Trying my best not to think. If I think about Lila too much it just crushes me. It takes me a long time to put myself back together.  And so I have been avoiding thinking, remembering the details, remembering her laugh, her smell, her smile and her spirit but there have been a few things lately that have made lila's presence all too real.
Eliza turned ten this month, such a miracle. Her parents were told that she only had a year or two to live that was when she was two. We went to celebrate with her and this huge milestone. When I bent down to  talk to Eliza the spirit of Lila just overwhelmed me, I felt like i was talking to her. I lost it and couldn't stop crying. I had been avoiding the pain for so long that I forgot the amazing spirit that we use to have in our home. Ruby came over and was so thrilled to talk to Eliza. I think that she could feel it too. I think that we have all been missing that feeling.
Then the new Cinderella movie came out. I know that seems an abnormal thing to bring Lila into my life, but all my friends seem to be taking their little four year old girls to go see it. Tonight I broke down as I imagined her and I hand in hand watching this magical story. For the first time in a while I really sobbed, chest racking sobs. And I realized it was a good thing. It reminded me of the pain, of the fact that it was real. That I had Lila, that she was mine and that is all that matters.

Tuesday, March 3, 2015

Rare disease day

It was rare disease day on Feb 28th. Our beloved neurologist talked about our family and the power of persistent parents at the rare disease symposium.  Seeing lila's MRI on the screen brought back a lot of emotions. We are so thankful that we got a diagnosis and my heart just aches for those families who are desperately still seeking theirs.
This little girl of mine is still inspiring others and giving hope. She is amazing