The more things change the more they change.
I wish I could use the more common form of that saying; the one we all know and use, "The more things change, the more they stay the same.", but it simply doesn't apply here.
The past four nights have been filled with endless thoughts of what we are now facing in terms of Ella and SMA. The past four nights have found us awake several times each night caring for her, even while taking shifts. The past four nights have brought to us the reality of what it means for a loved one to have a degenerative, progressive, terminal disease.
Our multi-disciplinary clinic brought with it a host of changes. These changes are necessary. The nature of the disease is causing our little girl to require more intense interventions. Of course, this means that whatever "routine" we had going up until that point changes.
The way we feed her is changing. The manner in which we have been bathing her has changed. How we hold her and pick her up has changed. Our nighttime routine and equipment that is required for a healthful sleep has altered. The equipment that she will need very soon has changed more quickly than we anticipated. Just when we think we have something solidified in her life...it changes.
While change is normal and to be expected, the types of change that occur with a child diagnosed with SMA affects their very life...directly. The pressure upon us to make sure we are doing the very best for our Squishy mounts itself upon our shoulders. It steals our sleep, tries our patience, pushes our creativity to the limits, exercises our common sense methodically, and slowly taps away on our peace of mind like a small hammer tapping a nail...tink...tink...tink...tink.
The more things change, the more they change. The funny thing about it all is I am somehow becoming more used to this perspective. I still wish I could use the more common saying, though. In fact, as I was getting Ella dressed for bed this evening I was thinking about that saying and I found something that would apply...
Her.
Ella.
The more things change, the more they stay the same. Wrapped up in the changes that surround her life like the bath towel surrounding her, I realized that she has remained the same. She has remained the delightful, loving, and smiling child that God has intended her to be.
