Avery Grace

Avery Grace

Friday, August 19, 2011


Last night I was rocking my sweet baby P to sleep in a green chair we bought shortly after we found out we were pregnant with Avery. Three girls later, that chair has seen MANY sleepless nights, and soothed both me and my girls through some pretty trying hours. Hours where we thought we may never see a full nights sleep again... (5.5 years later we are still waiting on that one), hours where we feared for Avery's life, hours where we then feared for her and our future, hours where we calmed our babies and soothed our own heartaches, and hours where we cried happy and sad tears, redefining "struggle," "sadness," "grace," "joy," and "hope."

I've rocked my way through countless doctors appointments, evaluations, re-evaluations, dozens of therapies, therapists, heartaches and victories. I've closed my eyes and been so grateful for calm moments, the smell of my babies' hair and breath, the sound of their breathing. I've rocked through helplessness, anger, fear, and anxiety. I've rocked my way to finding peace... even if it is only a moment at a time.

I couldn't help but remember last night about how many times I have sat in that chair and reflected on the day, the circumstances, the cards we were dealt. I think my nostalgia comes on the brink of Avery's next step in her school life. As we are days away from her first day of "kindergarten." And I am feeling a little overwhelmed, sad, happy, eager, hopeful, and anxious all at the same time.

Even now, as I write this I am only a couple of hours away from Avery's kindergarten "Meet the teacher night." It is a night most mom's both eagerly anticipate and dread all at the same time. Traditionally the beginning of a long road of excellence, learning, and achievement. I've been feeling similarly to most mom's I suppose... I'm ready for a more "stable" schedule, but am also bittersweet about the daunting experience that lies ahead.

As far as I know, Avery has no idea about what is coming up next. I have "told" her about her new school, and even showed her pictures her precious new teacher sent over to her special ed preschool last May. But Avery's disability prevents her from being aware of almost everything outside of her immediate visual field. She cannot respond to my explanations, she cannot tell me what she knows or feels, and she doesn't respond to even simple labels or stories. It must be so hard to be feel so completely alone and on your own. We will always keep trying to reach her. But nonetheless, it is very hard to get through on any level.

I don't really have the "kindergarten blues." I have a little bit of the "this is not what I expected when my sweet girl was a baby and I imagined this day blues." However, she will be in a very special class called "life skills" with several kids all of whom have special needs. I think she will have 8 kids total and three teachers. She'll need all the help she can get. I am a little terrified of her being teased for making silly noises, and her getting lost as she can't "stay" with a group. But my sweet husband assures me that neither she nor we will ever know that she is being teased, and that her teachers will protect her from harm, loss, bullying etc. But I'm still the slightest bit terrified. Deep breaths.

In many ways I have to remember that my special child, though so very disabled, is perfect in many ways. She is our first "baby" and has taught us more than we could ever teach her. I've been "rocked" to the core with sadness.... but have come around, learned how to change my perspective, and move forward with positivity, unconditional love, and acceptance. Still... these next few days will be hard ones for me. Seeing kids who should have been Avery's peers start their elementary schools with backpacks on and smiles on their faces will be tough to swallow... but we will rock our way through this too, and come out stronger and more prepared for whatever lies ahead. So happy "new beginnings" everyone! May you count your blessings and savor precious moments in the last few days of summer.

1 comment:

Kristy said...


My 6 year old has systemic mastocytosis. His main symptoms are behavioral. I was wondering if you've looked into Dr Theoharis Theoharides work and the supplement(Neuroprotek) he has developed? I was thinking of trying it for my son. Thanks,