Avery Grace

Avery Grace

Tuesday, November 25, 2008

And a wave makes it all okay

The strength of your character is truly measured when you face your darkest, weakest moments. Our darkest moments have certainly been seen in the past twelve months, and I really feel like we are coming through it in a blaze of glory. This week we have endured Kaylee's first ear infection, a kidney infection for me that landed me in the ER for several hours, and a croup so bad with Avery that her lips were turning blue and she is now on steroids for a few days.... all this and we are about to host Thanksgiving for a large group in less than 48 hours. But you know what... none of that even begins to compare to the utter JOY we are experiencing as we watch Avery consistently wave bye bye, start to imitate some words, grab our hands over and over again to play ring around the rosy, and finally look.... really LOOK at us and smile from time to time. Who cares that I have to follow her around with a can of Lysol and put a health hazard sign on the door. My little girl is, dare I say, coming back a little bit. Over a year of regressing backwards.... and finally, a nugget of hope to hold on to.

This Thanksgiving I am more grateful than ever before in my life. Grateful for my dedicated, loyal, loving husband, for my unique, special, sweet girls, for my generous, and all involved parents and for extended family, for friends that would move mountains for me, and even for Autism. Autism has shown me a way to see beauty in the smallest ways. To really "get it" I think. I am humbled and thankful for all the experiences that have brought me to the point of evolving into a better mom, and therapist. So this Thanksgiving... remember that it isn't "things" that we should be so grateful for, and it isn't even just "good luck" that we should be thankful about. It's the crap in our lives that makes us stronger... that's what is truly magic. It is what REALLY teaches us how to live.

On a side note...
I spent 8 years of my life "training" to help kids and families with Autism. Now I get to use that "training" in my real life. After 3 years of work, I am FINALLY, and officially a certified RDI consultant. Check out my name on their website! There are only eight consultants with this speciality in the state of Texas. I am not sure I am ready to dive fully into it and take on a full load with my current priorities, but I am a bit proud nonetheless.


Saturday, November 15, 2008

In the Present

I wonder how many times in a day I think back to the first year of Avery's life, and try to hold on to the memories of how she was... of all that she "used to do." I also wonder how many times a day I think ahead to what is to come, pointless really, because who really knows. I worry needlessly about struggles we haven't even begun to encounter yet, and quickly try to redirect my thinking to what is happening right now. I try to remind myself time and time again to live in the present.

On one hand I wish we could freeze time. Today Avery is still only 2 and a half. It's okay that she is still in a highchair, still has to be spoon fed at times, and still doesn't talk. It's pretty obvious that she is different than most two year olds, but the differences aren't drastic yet. On the other hand, I want to fast forward to when she will be verbal, when she can do more for herself, to when she can share her joys and sorrows with me. I know she will always have Autism, but I also know that the sky is the limit for her. I KNOW that she will make progress.

But lets get back to today. TODAY is all we have. It is a beautiful day. TODAY Avery waved bye bye THREE times to her beloved therapist. TODAY Avery said three words... sticker, uh oh, and bird. TODAY Kaylee is babbling and cracking up at silly faces. TODAY Avery's face lit up with smiling anticipation as she was walked to the car after preschool where I was waiting with open arms to greet her. Sometimes people spend way too much time focusing on what they cannot do, and/or on what they cannot do anymore. Avery's therapist was making a great point to me when she said " I USED to be able to put my legs behind my head... can't do it anymore, and I am not going to worry about it." I can't run a marathon, I can't win a spelling bee, I can't play piano. I wish I could, but I don't worry about what I cannot do... I can do a whole lot, and so can my precious two year old. She can walk, she can laugh, she can do ring around the rosie, she can do puzzles, she can follow some simple directions, she can paint, and she can bring happiness like none other to those around her. I am so grateful for all that she CAN do. I am so blessed by all she is teaching me.

Saturday, November 8, 2008

A look.

Bryan and I have often said that when Dora the Explorer is on TV, our house could be burning down around her and Avery wouldn't notice. She LOVES her some Dora, and a few other Noggin shows as well. Just a few minutes ago, Bryan woke our groggy girl from a late afternoon nap. To avoid a "meltdown" we put on her beloved Dora while she thaws out and drinks her rice milk. I walked in after laying Kaylee down for her nap to join my sweet girl on the sofa while she watched... we always hold hands and snuggle, but today... she gazed at me.. for like 5 whole seconds with a big smile on her face... as if to say "Hi Mama... thanks for sitting with me, I am so happy to see you!" Avery often "glances" at me and Bryan... to check in or make sure we are still there... but a gaze, a true gaze is rare. Rare and precious. She has been doing this from time to time this week and I love it. It isn't something measurable on a developmental assessment, or something many of you with "neurotypical" children can even really understand or appreciate, but to me it is a step towards the holy grail. It means she is connecting.

Earlier in the day we went to a birthday party. They are getting easier for Bryan and I to tolerate... especially if we bow out a bit early before Avery is expected to sit and eat pizza and cake... neither of which she will touch. It was a bounce house place with several types of equipment for the kiddos to play on. There was a big slide, and I hiked up to help Avery get to the top (since her motor planning/strength still prevents her from doing this on her own) and watched her slide down the big slide. Before I could reach the bottom, some friends of mine helped her off and she was visually checking in with their FACES to find me.... and once I reached the bottom, she looked right into my face and was relieved, and we went to the next thing hand in hand. I know it seems silly to celebrate such natural human tendencies... but for 15 months we have been watching Avery slip further and further away from us, and now, even if just for a few moments of each day... just maybe, she is finding her way back. We are here sweet baby girl.... and even if it takes a lifetime, we will be waiting to welcome you with open arms.

Thursday, November 6, 2008

Dressing Up

Halloween came and went without too much commotion. I admit to being a little sad to see that Avery didn't "get it" at all yet... but then remembered all that I have learned over the past several months and decided to celebrate just being together as a family.
Halloween is the one day a year when it is okay to admit you are trying to be something you are not. It's an interesting concept to ponder. Everyday in the community I live in, people are trying to demonstrate an "image" of perfection. We live in houses above our means and dress our kids in clothes to expensive for the few minutes they actually wear them, all so that we "appear" to have it all together. I am as guilty of this as anybody, maybe even more so. I can even remember saying recently that although Avery may have Autism... "she will always look cute dammit!" I guess that is something I can control in this uncontrollable world I reside in. What I am trying to do through this blog and in my personal journey through this unpredictable world we live in is shed my costume, and really open up about the pain, joy, heartache and victory of living in a imperfect world blemished with disease and disability. To show that even in our darkest moments, there are little blessings that add so much more to our character than a fancy car or a fabulous wardrobe. The more I live and learn, the more I realize how little value "things" and "status" really hold. Comparing ourselves to others, in any form or fashion, is pretty pointless. Being truly self aware on the other hand, and focusing on our own growth and strength, is what makes us better individuals. But even being "individuals" isn't really the point. What really matters is our relationships. How we love each other, and how to do so without judgement, criticism, conditions, or expectations. So each day I strive to be a little less "dressed up" and a little more real. Real about my family. Real about myself. Real about my feelings. Real about what really matters. No costume needed. :)