Avery Grace

Avery Grace

Tuesday, June 30, 2009


Okay, so I decided it would be a good idea to post again in case some of you were worried I may have jumped off my roof yesterday or something. Obviously, it was a bad day. A REALLY bad few hours... pretty tear filled and over-anxious, but as it always does, and did today, the sun came up again and we were able to start fresh. In the big picture, days like yesterday are pretty few and far between, and it's not really Avery that changes all that much, but it is how I perceive my circumstances, and how I am able to cope with the MANY challenges having a child with several health problems, including Autism.

Sometimes it truly does feel like my world is caving in. Like I can't get a grip. I think about life BA... (before Avery) and I am instantly snapped back to how much I adore her. How she lights up my whole life and brings me compassion beyond measure. It is manic how in a few moments I can move from being totally overwhelmed to focused and driven. But I am doing the very best I can, even though many days I feel like my children and husband deserve better.

On a positive note, Avery continues to make some (albeit very slow) progress. She is really much more aware of her surroundings. She is pointing out pictures in books and magazines all the time. She is responding to her name and to several simple commands or requests. She is smiling AT us, she is taking actual bites of food instead of stuffing or me having to cut every single piece up, she is making a few sounds, and she is climbing better and ALMOST running. All steps in the right direction. Looking back on the past two years, it seems with every step forward we have had two or three steps back that quickly followed. Hopefully, the progress she is making now will really stick. I remain hopeful. I am staying focused on today, trying to push out the anxiety and worry. It's a battle. Hour by hour, we are surviving this fight. We are moving on, and doing so with very precious cargo. Keep your fingers crossed that our perspective stays in check. Because our lives are truly enriched by those that need our help the most.

Monday, June 29, 2009

A Moment

I need a moment. Right now. A moment to curse, scream, hit a wall (which I actually did and think I hurt my hand) and just freak out for a while. I DO NOT have the patience, tolerance, willpower of whatever it is I need sometimes to get through hours like this gracefully. I just don't. It's not pretty. I keep praying for it. Praying for strength... but I feel like I am losing my mind sometimes. I really do. Just this minute I am coming off of holding my screaming, flailing, flapping, sweating, hysterically crying, not to mention exhausted 3 year old for two full hours. Two miserable, out of control hours. She is finally sleeping. Maybe she wore herself out from crying all day and most of the night last night. Or maybe the medication I gave her to calm down finally kicked in. Whatever it is, she is out. Finally. I don't care if she sleeps all afternoon. But with my luck, she will be up again in 15 minutes.

Sometimes, it's rare, but sometimes, I really think I can't do this. I wish I could have put her in her crib and walked away... but now that she can climb out, that's not an option either. And it's really not her fault. She doesn't have the skills to know how to regulate her emotions, her body, or her reactions. She can't tell me what is wrong. She CAN'T calm herself down. So I have to. I have to calm us both down. I just get so frustrated. I have to hold her tight, pin down her arms and legs, try to keep her still, while she literally SCREAMS in my ears. Almost unbearable.

Nobody should have to see their child in agony hour after hour. Nobody should have to guess at what is wrong with their sick child who can't tell me what's wrong. Nobody.

I don't have it in me to keep my sanity on days like today.

So I apologize for not answering the phone. For not returning email. For being selfish. I just don't have anything left in me after the last few days. Nothing except for the love, attention and care I have to give to my girls. Nothing.

Saturday, June 13, 2009


There is some difference of opinion in the Autism community when talking about "acceptance." Some parents may say they will never "accept" their child's Autism diagnosis, and others choose acceptance pretty early on and do little to navigate through the maze of biomedical opportunities and various therapeutic treatment options. I fall somewhere in the middle of this dichotomy, and am choosing to "accept" some of the "truths" of Avery's condition, while at the same time working as hard as I can to help heal her, and give her brain and body the best shot possible to help her be all that she can be.

Acceptance is a loaded word, because in no way am I totally "okay" with Avery's struggle, but I am beginning to recognize that through her circumstance we are finding hidden gifts that are unfolding qualities in our soul we never knew existed. The day by day, and let's face it, hour by hour ordeal of having a child with special and medical needs is cultivating virtues and talents within me that never could have come to be without this experience, and so I can certainly accept that and can be grateful. Grateful for the lessons in patience, TRUE unconditional love, tolerance, endurance, compassion and serenity.

Early on in this crisis, I didn't recognize that the crisis itself was actually a threshold for something much bigger in my life. It has been the greatest lesson in spiritual growth I have ever witnessed, less well experienced first hand. The crisis was in itself a crossroad. It marked the end of the world as I knew it, and through time, has helped me let go of fear, false concepts, misconstrued ideas and false identities. Gradually, I am learning to stop projecting so much, and start living for today. To really BE in the present. I don't want to waste my time and energy on the "what ifs" and instead, am trying to use that energy in loving my kids and husband. It doesn't mean I can't grieve, in fact, it means the opposite. It means that in feeling life deeply, I can really feel the sadness, but then in turn, I can also totally bask in the joy of what is working for me right now.

If I am going to survive this, and come out a stronger more true and complete individual, then I have to let go of the "why me" breakdown, and be in control of my own thoughts, intentions and actions. So I choose to accept the challenge. But rest assured I will do so with a ferocious desire to continue to heal my sweet daughter at the same time. She deserves that.