Friday, September 23, 2011
Every single morning on our way to take Kaylin to school she moans and groans about how she doesn't want to go, and how she just wants to stay at home. Some days there are tears, others tantrums, but the message is always the same. Then, the minute we get there, her face lights up, she JUMPS out of the swagger wagon, grabs her backpack and literally RUNS towards the school and into her classroom... never looking back. I hardly even get a "bye, mom" once she is inside, and she quickly focuses her attention to her "buddies" and the toys. That's Kaylin for you. Feisty, fierce, dramatic, and glaringly independent. She is always two, or twenty steps ahead. In every way. That is how she has been since infancy, and I bet she takes it with her to her adulthood. Her pace is fast and determined, and no one better get in her way.
Her "big" sister on the other hand is on a different path, and a polar opposite pace. While Kaylin bolts ahead in every way both literal and metaphorical, the same is true about how Avery lags behind. Her steps are cautious, unbalanced, and uncertain. Thankfully, she is a very "go with the flow" kind of kiddo, but disease and disability have taken away most of her awareness of both herself and others, so when outside of the house or her classroom, her steps are never taken independently, and she always has someone guiding her by the hand, leading the way for her. Always.
So this is why in just a few short weeks we will gather once again to "walk" for Avery. An "ARMY" of supporters have gathered the last two years to show our family support and raise Awareness for Autism. Avery's steps may be slow and dependent, but when surrounded by love and support, she is unstoppable.
You see, every single day, we are reminded of how hard it can be to have a child as special as Avery. She cannot talk, so we are her voice, she cannot run, so we are her strength... but she can INSPIRE. She can remind you of how to celebrate real, raw unconditional love that doesn't always have much to give back in return. She can feel the energy of the people who gather to celebrate her, even though she is different and "disabled."
I will take a zillion steps for Avery. As long as I am breathing, I will do my very best to guide her along. To help her keep up in a world that isn't always accepting of her and her differences. I can't do it alone, though. Hard as I might try, I still need help. I may never be able to truly get over my child's brain "changing" when she was about 15 months old. It still haunts me at times... to think about who she could have been. But, thankfully, my precious 3 year old reminds me EVERY DAY to keep moving forward, and stop looking back. To live life with gusto, and let passion drive my actions and steps. Avery needs a sister JUST like the one she has. And I am sure Presley will find her place and be a source of courage, guidance and leadership for Avery as well.
So I would like to invite you to take a few steps on our path. To come out and walk as part of "Avery's Army" in the DFW Walk Now for Autism event if you can. In years past, our most precious friends and family took a few hours out of their own busy lives to lift Avery up. To raise hope and Awareness for a sometimes devastating disorder. Please visit our team page if you are interested, and even if you can't join us on that specific day, please consider making a donation to raise research funds and hope for kids like Avery. She needs all of the love, support, awareness, and guidance she can get... and collectively, we can really make an impact.
Visit our team page at
Wednesday, September 14, 2011
My sweet Presley Hope had her first birthday on August 30th. I'm not a good enough writer to adequately express the variety of emotions that this milestone generated. There was immense gratitude and elation that she is healthy, happy, and seemingly "on target" so far in her development. There was a touch of despondency that she is growing up, and no longer my "infant." And though I hate to admit it, there was also nostalgia and fear. Memories of my neuro typical 12 month old Avery who was also waving, talking, social and adorable flooded my mind as I planned and prepared for this one year celebration, which also uprooted grief as to who she had been, before her brain took a left turn off of the normal trajectory, and she spiraled into the very disabled, (yet still adorable and endearing) 5 year old she is today. I remember these feelings with Kaylin. I remember wanting to capture every word, every new skill for fear that she would lose them, and I would again be mourning a child who "used to be different." Thankfully, I was able to let go of that particular fear once Kaylin was about 18 months old and speaking in 7 word sentences... so now the waiting game with Presley begins... and I must admit that I am holding my breath a little bit... though so far she is doing marvelous.
Another looming fear over the summer was Avery's upcoming transition in to elementary school. It was a rocky start, but thankfully, we are three weeks in and I am feeling an enormous sense of relief as she is beginning to settle in and her teachers are learning how to work with her. We are very fortunate to have a team of dedicated therapists, teachers, and case workers all committed to helping Avery.
All too often I let fear control me more than I should. Letting go of that fear and having faith and confidence that we can survive and can be better because of unfathomable circumstances is often easier said than done. It all goes back to the absolute certainty that this life, that these moments we share... they are all a gift, and in order to discover true happiness and fulfillment, it is critical to have an attitude of gratitude. To remind yourself constantly of the countless moments in your life that make it all worthwhile. Without that appreciation, that humbling awareness... fear takes over, and nothing good can come of it. So today, or any day for that matter when fear grips you and takes a hold of your mind... remember that this too is an opportunity to choose love and gratitude over fear. Life is so much more fun and enjoyable when we decide to take control of our anxiety and sadness, and just be content, grateful, happy and at peace.