One of the teen boys walked through the living room at eleven on his way to bed and stopped. "Where's your phone?" he asked, "You need to blog about this. You need a photo."
He grabbed my smart phone before I could protest. I cringed. Not a photo now, I thought. No make up. An old sweater. The shorts. (Dear Lord, no pictures in shorts!) The callous on my right ankle from sitting cross-legged on the floor for hours a day playing with a toddler. This mess around me.
A year ago I did not know this late night mess in my living room was part of being Nathaniel's mom.
This constant paper work. Constant advocating. Constant organizing and planning. Constant phone calls. Constant emails. Constant diligent attention to detail because so many play a role, but someone needs to put in all in a binder, put it all in a twenty-four hour day, put it all into a life.
Josiah gave me back my phone. "Use the first photo, Mom. It is the better one. Night." He leans across stacks of papers to hug me.
A stack for prescriptions. A stack for therapies. Speech and augmented communication has a stack of its own now with Nathaniel's gesture and sign dictionary just added. A stack for our nurses. A stack of daily schedules. I stay up late into the night before his appointment with Newborn Medicine to sort and print and create. I go to the appointment feeling on top of the stacks only to have the dietitian add more free water to his feeds. She sends me home with new papers.
I have forty-five minutes left in our day nurse's shift when we get home. I spread it all out on my bed again. I take a red pen to my work and recalculate my recipes and start the stacks again. Every change has to documented for the nurses on his schedule, on his treatment plan, on his Form 485 that gets sent to the insurance company and signed by the pediatrician. I send a quick email to the nursing supervisor letting her know of the diet changes. "Thanks," starts her immediate response. "I'll update everything on my end next week when I come out." Tomorrow Nathaniel sees his ENT, Monday his neurologist, the nursing supervisor comes first thing Tuesday morning and then the therapies for the week.
There have been many times over the last year as Nathaniel's mother that I felt more like an administrator than a mother. Recently a nurse said, "Tell me you do not work too, because he seems like a full time job." I affirmed her assumption; Nathaniel is a full time job.
I did not bother to explain that my children have been my full time job for twenty-five years. As if children are jobs we do or start or stop. I did not bother to explain that I am still at my post of loving my other seven children in addition to Nathaniel. Because unless she had been on the walk I took Monday morning with my nineteen-year-old, she might not believe a kid so old would say, "I appreciate that you are here for the everydays, Mom."
The everydays. I wrestle being the mom who was almost done with everydays and the mom who is just starting. This calling to be Nathaniel's mom is whole second chance at everydays. New everydays that include paperwork and appointments and phone calls and a calloused ankle and a photo of the real me on the internet and rocking to sleep with dried blue paint cheeks pressed close to mascara free eyelashes. Everydays learning what this mess called being Mom is all about.
