Just recently Ella was complaining of her nose hurting while taking her bath. At the same time she was also having rough nights, one after another. Her bipap machine was also going off throughout the night...much more than usual.
We put two-and-two together and figured out that her overnight mask was too tight. For a few nights we experimented with different "tightnesses" until we found a happy medium. So far things have been back to the normal nightly routines. With one exception...
During the time before we figured out what was bothering Ella she would always say to me, as I was bathing her, to "not wash my nose when you wash my face". Of course, I obliged. Once we figured out the bipap mask issue I figured this request would stop, yet she continued to say the same thing night after night.
As time rolled along I gradually began "skimming" over her nose to make sure it was, in fact, getting clean...at least somewhat. She never whinced but always prefaced the face washing with, "Daddy, don't wash my nose when you wash my face."
This has gone on for a good month or so. I think now it is simply a matter of habit. She tells me not to wash her nose, I say, "oh, ok...no problem." She closes her eyes tight and scrunches up her mouth as to not let any soap enter either place and I proceed...I wash the sides of her face, wrap around the ears, clean her jawline and chin, and whip, ever so gently, over her cheeks and the sides of her nose while saying at the precise moment, "Ok...now we got it." She waits patiently for the stream of shower water to wash over her face as I count to three and the ritual has ended. Her nose is clean and she's none the wiser.
As I worked through this process one evening a realization washed over me. I realized that I will be bathing my child, most likely, for the rest of her life. This is not something that most parents can say. At some point, quite naturally, the bathing becomes a personal responsibility. The child grows and becomes independent.
I thought about this briefly as I was washing Ella. And I was awestruck at how much she trusts me as I moved her from one position to another, making sure not to miss any part of her in the cleansing of her body. She "rolled" with me; she allowed me to adjust her accordingly; she put her trust solely in my knowledge of her physical limitations. Through contractures, weakened joints, and "floppiness" we work together to make sure she is cleansed with dignity.
I've been bathing Ella since her birth. I've watched, with a sad yet watchful eye, how SMA really does affect the human body. I have also watched, with amazement and pride, how well my three-year old accepts and works with what she has.
"Don't do my nose" she says...
