I’m a little severe (as if you don’t know that already). I like clear directions and a solid game-plan. Ambiguity, “following your heart” and lack of direction really get on my nerves.
As a teenager, I believed that if I wasn’t losing weight, I must be gaining weight. There was no such thing as rest or refueling. Constant forward motion was the only option, even if it meant leaving good things and good people behind. (I’m also frightfully impatient and do everything with often unnecessary haste).
Even now, laundry MUST be done immediately and I must do all of it. If dirty clothes are accumulating in the hamper, I feel a restlessness that pushes me to accomplish, in sickness and in health, for better or worse. Like I said, I’m a little severe.
Thankfully, my perfectionists tendencies have largely softened - life has a way of crushing idealism - and the greatest catalyst by far has been Avery.
From the moment that perinatologist informed me of Avery’s condition while I was seven months pregnant, my very nature has been at war with this new concept - the unknown. As a matter of fact, I was so concerned with having my questions answered so that I could plan my next steps that I forgot to experience emotion. My world had changed forever in the ultrasound room that day, and yet my pulse did not quicken, nor did my eyes shed tears. I was concerned with black and white research and a clearly defined plan of care for this new baby. I wanted to know how her condition would affect her birth or exactly when she would need a surgery so that I could adjust my vacation plans accordingly.
No one could answer these questions and I have discovered in the three years since - there are very few answers to be found when it comes to medically-fragile, special needs, syndromic children.
At first, the term “wait and see” would stir up such a hurricane of indignation in my soul and for eighteen months, I feverishly searched for anything concrete that would explain how or why Avery had developed as she had. I immersed myself in research and pleaded with God to reveal the gene that had “gone so wrong”.
I believed what I needed more than anything was ANSWERS. I believed that clarity would save me and a game-plan would set me at ease, but what I know now was that the only thing that could save me from myself, was to drop to my knees in front of mine and my daughter’s Creator - the only Source of perfection - with my need for progress and perfection still clutched between my white-knuckled hands and then... let. it. go.
I had stop searching. I had to surrender to the “wait and see” - not with panic and anxiety gushing from my soul - but with the peaceful knowing that He who started this great work known as “Avery” would see it to completion for His glory - even if “completion” meant taking her home with Him. My version of perfection is not His version of perfection. He didn’t need my research, He needed me to rest in Him. He didn’t need my forward motion, my incessant “progress” - He needed me to be His kid, holding His hand, toddling by His side, confident that my Dad would take care of things. I didn’t have to be perfect, I needed to be placid.
I still like answers - my nature will not change - but I am more comfortable with ambiguity these days. There’s so much I don’t know about Avery and the coming days, but I’m more comfortable with the unknown and I’m confident that the outcome does not rest in my hands. My knuckles are resting.