Alive and With Us

“Elation and gratitude. I felt nothing less. We had a disabled child, but I was grateful for her in any form, as long as she was alive and with us. ”  Love For Our Afflictions

“Alive and with us.” I still feel this way today, and although it might seem as if my standards are set low, they are anything but. I believe in my heart that Avery has only begun to achieve what she will in her lifetime, but my gratitude still begins and ends at “alive and with us.”

On the eve of another bi-annual ARD meeting, I know that I have to rejoice in the beaten odds of survival and success while maintaining in my heart the authentic gratitude that she is “alive and with us.”

Tomorrow I will hear elaborate detail on what Avery isn’t achieving and what she cannot do, and while it won’t be easy she is “alive and with us.”

No, my chid isn’t on track— not even remotely.

No, she can’t walk. She cannot talk. Or read. Or do any of the other hundred tasks expected from a “typical” third grade student. Tomorrow, in fact, speech will tell me the significant trouble and failure with activating just four communication buttons with any success or understanding.

Believe me, I understand everything she cannot do and hasn’t achieved more than any professional, therapist or teacher sitting at that table. We will be living with those “failures” for the next two decades if she is “alive and with us.”

Tomorrow, I have to remember everything Avery has achieved and although it is taken for granted by almost everyone, I will say it loud and clear here….

She has survived.

Survival is her challenge. It isn’t reading, writing, speaking, walking. Her challenge is basic, so basic that no one considers it “a success” in life.

From the moment we were told of her diagnosis, I only wanted her to survive. I couldn’t let go. I wouldn’t let go. I refused termination vehemently. I believed, as I continue to believe, that she will decide her fate.

Some of us aren’t here on this Earth to be like everyone else. Avery’s isn’t, nor ever could be, like everyone else. Her spirit isn’t the same.

I know these lessons are important, vital even, to her ever learning a skill that would give her a role in society. But as she ages, as I age, and as I contemplate the bigger picture—- I wonder, is that her role?

Is Avery’s role ever to possibly, best case scenario, learn the alphabet enough to sort something? She will never marry or have children. She will never work, even as a cashier as I once dreamt her doing when I would see adults with cognitive delays working retail.

She will likely be in diapers for life. I won’t be volunteering for her special Olympics team. She isn’t on the cusp of a normal range of development and inclusion.

Avery and inclusion? There is a dichotomy by definition. Avery is Avery. Avery is a different being altogether. She isn’t concerned over daily tasks (obviously by her unwillingness to work). Her soul and her awareness is so much greater than any one of us can imagine.  

When we say that Avery holds the secrets of life, but cannot communicate them perhaps there is a kernel of truth in the joke.

While, I will continue to support Avery’s education and any attempt made to create a better future for her I am beginning to wonder if I am applying earthly expectations on a soul that is obviously here for so much more than sorting and being pushed into the shadows of society.

Children and adults like Avery are so much more than “typical”. She is curmudgeonly. She is an old woman (or man) trapped in an eight-year-old disabled body. She laughs on point with every adult joke, right on cue. She knows things and does things that she shouldn’t know, that no one has taught her. She couldn’t be a “typical” child if she was a typical child.

I don’t know why Avery is here, but I know with certainty it isn’t for inclusion. I know with certainty that her soul is much more aware and in touch with something greater than we can fathom. She isn’t on the cusp of “normal” but she most definitely is living on the cusp with the before and after that we can only postulate it’s existence.

I know this because I am not raising a “typical child”. Most days, I’m not even certain I’m raising a child at all, but rather a cranky angel on earth that has lived more years than I can count.

So, no, she hasn’t achieved the list of milestones that I will likely sign and attest to at the conclusion of tomorrow’s meeting, but she is

“alive and with us.”

And possibly here to teach us lessons beyond comprehension.