Songs

I was furiously going through the toys pitching anything that was broken and unfixable, organizing the toys in the "keep" pile, and filling a box with things to donate. I woke up in this mood. The "I'm having feelings that I can't express so I'm going to clean and organize everything in my path" mood. I think Isaac locked his door.

Before church, I cleaned, organized, and rearranged Esther-Faith's room. After church and a birthday party, I tackled the front room, dining room, and play room. Tim--tired from the midnight shift and not enough sleep--managed to convince me not to move the desk. The desk is HUGE. It holds just about every gadget and electronic we own. In addition to being the not-so-organized catch-all for mail, report cards, and miscellaneous craft projects. I even think our taxes are stored in one of the drawers.

In short, moving the desk is a day-long project. Not an hour-long project. It wasn't going to fit into my plans for this evening. Really, my plans were not to rearrange, they were to forget about tomorrow.

In the morning, Esther-Faith's favorite person arrives in the wee hours to hold down the fort while Tim and I take our baby girl to the hospital for a sedated MRI of her spine. I've been on the phone with the folks in MRI three times in as many days. It may be routine for them, but it isn't for us.

In the midst of my cleaning spree, Esther-Faith grabbed Tim's acoustic guitar and started strumming. She sang "Twinkle, Twinkle Little Star" and "Jingle Bells." Then, she started making up songs about each member of her family.

"Isaac is stinky. Isaac is stinky. Isaac is stinky. Isaac is ssstttinkkkyyyyy."

"Isaiah is weird. Isaiah is weird. Isaiah is weird. Isaiah is weeeeiiirrrrddd."

"Daddy is cute. Daddy is cute. Daddy is cute. Daddy is cuuuutttteeee."

And then she got to me. I wanted to hear her song. I really did. But after stinky, weird, and cute, I wasn't sure I wanted to know what she had to say about me.

"How about this?" she asked. "Mom is..." she paused.  "Love."

Love.

I won't lie, as I cheered her on, hot tears stung the back of my eyelids. It was like she knew I needed some reassurance about tomorrow. Oh, she's had her share of tears. Like when we told her she couldn't have her daily bowl of rice krispies. Or that Kate was going to stay at our house while we went to the hospital. Or when we explained the whole procedure to her. There have been plenty of tears the last couple of days. But in the end, it seemed that she knew it was all going to be okay. And she let us know that, too.

It is going to be okay. This is just a sedated MRI. And last Friday was just wheelchair clinic. The people on Esther-Faith's care team are amazing. With many of them, they make us feel like Esther-Faith is their only patient. That her progression and growth is of equal importance to them as it is to us. Picking casters for her wheelchair that will be best for ballet. And wheels in the back that would work for racing. Letting her choose the color herself. Understanding when she was tired of it all.

It will be the same tomorrow, I'm sure. People who care about Esther-Faith running tests to find the cause of her pain. Helping us help her. Loving her.

Esther-Faith understands--in her own way--that this is her life. And believe me, she makes the most of it. Choosing to love instead of worry about what people think. Choosing to cry when it hurts or she is scared. Choosing to sing. About anything. With or without a tune.