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

Tuesday, February 17, 2015


I'm feeling a bit down. I'm sure that it is because I have had far too much time to sit and think about the future. Thoughts on the future have never been my favorite. No wonder smart poets and artists plead with us to live in the now and be present in the day. Its a much more manageable place to be. 
So here I find myself once again waiting. Waiting for news that might just change our lives forever or make me impossibly sad. I thought I was prepared. I have been used to bad news, and nothing will ever come close to losing Lila, so why does it feel like four years ago waiting for the doctors to call and give me that news that confirms once again that we are headed into the storm? I forgot how much I hate IVF. How could anyone forget it? I forgot how much I hate the waiting, the shots, the hormones, the wondering if I am somehow doing something that will inadvertently thwart my chances of having this embryo turn into a child.  Everything about it is pretty awful and yet my miracle girl Ruby came out of this dreadful process how can I not feel anything but gratitude for the chance? I asked Quinn if he could meet for lunch today. I needed my best friend. As we sat at Chipotle and I cried across the table my partner looked at me, not with annoyance, but with deep compassion. We have been through so much. I felt like we both looked like very weary battered souls, bone tired and weak, but then Quinn strengthened me. As he so eloquently pointed out, we have done it before, worse for that matter and we would continue to fight for our family.  No matter the test results in a week we wont stop trying to figure out how to give Ruby a living sibling, someone that she can go through life with. Who will love her and who can commiserate just how crazy their parents are. It will be hard. The financial challenge alone makes me a bit ill, but I know that it is what is best for our family.