Mar 1, 2016 12:34am (Sara)

Today was good. She continues with most of the issues I spoke of yesterday but we did find some smiles today. In fact, one WONDERFUL smile came from seeing a picture of her brand new Leapling baby cousin born this very afternoon. His name is Arrow and we are all very happy for Auntie Page and Uncle Ivan…and for us. What a wonderful thing to celebrate amidst a very difficult time. New life. New hope. More fire.

We had good moments today…In between the tough ones but still good and worth focusing on. We had wonderful visitors today and while Maya can’t really interact with many people…I needed the hugs.

Maya’s belly is still so tight and distended…couldn’t be from the mass amount of homemade pizza she had today. OMG she is eating more than I ever thought possible.
She is fiercely attached to her daddy (it is certainly mutually beautiful) and while I don’t take it personally, it definitely stings sometimes. I do get brief moments of snuggles and “mommy will you rub me please?”. Mostly when Scott is not available but I’ll take what I can get.

Tonight we had bath time. It was nice (for me at least). After bath, I let her choose which lotion to put on her big ol belly and painted her nails. She was so sweet and loving.

One memory I never want to forget: I was brushing Maya’s hair after I washed it in the bath…she usually cries like crazy but tonight I had her just hold a wash cloth over her eyes and she leaned back on me. She said she felt like she was floating and it wasn’t until I said “well baby, you ARE floating” that she got uncomfortable. Leave it to mommy to blow it. Ugh.

Anyways, I was brushing her hair and I said “baby girl, your hair looks like it is thinning a little. Do you know what that means?” “No”. “It means that it is kind of falling out because of the medicine but it will grow back, promise”. Then she said “yeah, it will come back, mommy. And when it’s all gone me and Liam will both have no hair”.

Liam is my bestie’s baby boy. His motto is “no hair don’t care”. We never knew how powerful it would be.

She didn’t say the comment with a smile…the tone was more realistic. I sometimes find myself in shock with how brave she is. And how intuitive a 3 year old can be. I see her face these days with this look like she knows the inevitable. I wish I could make her inevitable filled with more bubbles and glitter than the harshness she is facing. I see her her swollen face and belly and ache for her. My little beautiful dragon. My brave courageous fighter. She doesn’t know how to be anything else and I’m so jealous of her strength.