Avery Grace

Avery Grace

Tuesday, July 21, 2009

Defining Moments

I have been thinking a lot about the moments in my life that have really shaped me as a person. Moments and events surrounding them that have enabled me to become, more or less, who I am today. Some of these moments involved revelations, some extreme sadness or loss, some were brilliant and breathtaking, others less memorable but equally astounding in their impact. There are big ones... wedding, child-birth, graduations, deaths, first days, new jobs etc., and smaller ones... all of them incredibly important in building my character, my humor, my stamina, my heart, my strength and my soul.

Some moments come quick and hard... others build up to an "ah ha" moment, or a moment when you finally "get" it. Whatever "it" is. Learning to appreciate these moments, however devastating or exhilarating they may seem at the time they occur... is a work in progress for me. So, reflecting on these moments is a great way for me to build self-awareness and better perspective.

One particular moment I will share with you I remember vividly... as if it was yesterday. It was actually almost two years ago. Avery was coming up 18 months. Eighteen months is a significant age around here, as she had started her developmental regression and I was in a panic. Knowing what I know... I was well aware of what was happening, but when it happens to you, I can't even begin to describe how heartbreaking it is. Anyway, we had taken her in to a new pediatrician who was intrigued by her mastocytosis, (the very rare autoimmune disease she was diagnosed with as an infant.) She sent us to a lab for blood-work to gather more information. At the time, I wasn't all that concerned, just following orders.

To make a pretty long story short, her blood-work came back with some alarming results that indicated Avery's Mastocytosis was likely systemic, and has probably infiltrated her bone marrow. I had read about this as a possibility, but learning that your beloved child may have mast cell leukemia was a very big "ah ha" moment for me. At that very moment, and for the hours, days, and weeks that followed... I virtually "forgot" about my autism panic. I remember the moment I bargained with God and said "I don't care if she EVER talks, just PLEASE keep her with us. Please help her to be okay." I was rocking Avery at night... I was crying, and I said it out loud over and over and over again. I begged. I meant it. I really did.

So, as most of you who know us well know, she did not have mast cell leukemia. She does have systemic mastocytosis, and will always have major health issues including various cancer possibilities, but for right now, she is doing okay.

That moment in the dark rocking Avery I made a decision. I decided that her life and presence was way more important than meeting milestones. Neurological disorder or not, I wanted her here. I wanted to fight with her, love her, and mostly, be with her as much as possible. I still feel that way. And when I get anxious to hear her words again... I am able to remind myself of that moment. The moment I decided that Autism was the better option. Even though I know it wasn't a choice.

Time marched on and in many aspects, we have come a long way. We have had a few more "defining moments" in our journey, and we all work tirelessly to help Avery heal. But what a gift that moment, as awful and unbelievable as it seemed at the time, has been with regard to our outlook and attitude. The hardest moment of my life has been the best lesson of all.

1 comment:

Jack said...

Very nice, thoughtful post. Continued strength and good luck to you and your family. And for more perspective and inspiration on the subject, I invite you to check out ahamoment.com, a website created by Mutual of Omaha to highlight good works and inspirational personal stories. I think you'll enjoy it.