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

Thursday, February 26, 2015

Ten months

My love. I carry your heart with me. I carry it in my heart

A miracle.

It helps to have a little angel looking out for you. We found out on Tuesday that our IVF round worked. We are pregnant. Its so weird to put it out there because I'm technically only 5 weeks along. But we are hopeful that this little survivor will continue to grow. My first ultrasound is next week. Fingers crossed!

Ruby in her "big sister" shirt. As soon as I got the call I ran down and bought it for her and took her to quinns office. He saw it,did a double take and burst into tears. It was pretty sweet 

Sunday, February 22, 2015

I'm Lila's mom

Tonight at family dinner my brother in law Joe was asking us if it ever  hit us during the day what it means to be Lila's parent. He was talking about his week and how he was getting exasperated with a co worker when he said he had the thought, "I'm Lila's uncle," it changed his whole outlook and perspective. Quinn said that he had had similar situations where he could feel his temper starting to get the best of him and then he would think, "I'm Lila's dad" and it would change everything. Their conversation really stuck a cord and as I started to take a moment to really ponder what the extreme honor I had to be Lila's mom I thought to myself  "I am Lila's mom", at once this peace and comfort started to go through me. In two days we find out if our IVF has worked and I am not very optimistic about what the results will be but I am Lila's mom. I am the mother of a beautiful, perfect little girl who chose me to be her protector. It made me feel strong. It made me feel like I was capable of being knocked down again. It made me realize that I can keep fighting and keep working because the most perfect being I know believes in me. She thinks I can do it, she has faith in me.

Thursday, February 19, 2015

Love you

Tonight ruby said those magic words that I have been desperately waiting for a child of mine to say. She said "love you" as she was going to bed.  It was just as sweet as I imagined it would be