Is this our forever?
A good friend recently asked me what kinds of things Leo was interested in these days?
“Toy Story, like always,” I responded, chuckling at the thought of how often I’d responded similarly over the years.
For as long as I can remember, Leo has been transfixed by the popular series of films; his love for Sheriff Woody, Buzz, Andy, and the rest of the Pixar gang, have stood the test of time, resulting in a most impressive collection of Toy Story merchandise; from figurines, to plush dolls, books, t-shirts, and the like...But more importantly, they have provided a sense of connection and belonging burrowed within a world of characters, and friends that have bestowed comfort and companionship onto my boy for years...
“Cool Sheriff Woody doll,” I heard someone remark, as I turned to find two young men appearing to be in their mid to late teens, walking past us in the grocery aisle. I quickly scanned their expressions, as best I could with half their faces covered, searching for any signs of malintent, while my boy vocalized loudly, squealing as he twirled his Woody doll around furiously with excitement.
As my gaze met one of the young men’s, he nodded knowingly,
“Sherrif Woody is my favorite.” He commented, genuine kindness reflected in his tone as they continued on their way.
I looked over at my sweet boy, carrying his pal Woody securely within his grasp, just as he has since he was a young child.
I marveled at how much my boy has grown since the day I bought him his first (of many) Sheriff Woody dolls; that moment etched in my memory, always. The joy radiating from his beautiful smile some 8 years ago remains woven in my now 10 year-old big boy’s being, personified by the clickity clack of Woody’s boots, each morning upon Leo waking.
Andy and I had a conversation a few years back about the future for Leo. At the time, Leo was primarily non-verbal, with a myriad of challenges that stifled any hopes that he might one day be able to live independently as an adult...Yet, as my amazing husband pointed out then and continues to today, the future isn’t set in stone for any of us; Leo included, and we simply don’t know where Leo’s journey will take him years from now.
It certainly isn’t up to us to write his story..
And while we still operate in many ways with this mindset, there comes a point where hope, and reality intertwine-
Leo’s Speech/Language delays remain immense. And while there is so much hope and pride in what he has accomplished, the reality is that along with Autism, progress is often paired with new and unexpected challenges, creating an ever-present roller coaster of thoughts and emotions...
Hope and pride is never extinguished, yet the years trickle by, and I find myself facing the stark realization that in 8 years time, my sweet Leo will enter adulthood.
My mind wanders to the reality of Guardianship once he turns 18...of Special Needs trusts, and all that looms in regards to caring for an adult with disabilities-
I worry about services- of how scarce they are once children like Leo “age out.” He will likely be able to attend school until he is 21 or 22. And then what? The options are limited and the worries associated with how I will help my boy as he grows into a man, daunting.
I have time, I suppose.
Yet, the memories of my boy holding his very first Sheriff Woody doll 8 years ago, are as vivid and clear as if they occurred just yesterday…
And I think once again of my friend’s question…
Will my answer remain the same 5 years from now? 10?
Will Leo still insist on taking his pal, Woody along with him on outings when he’s grown…and will there come a time in the not too distant future when thoughtful glances will turn to judgement, from those who don’t understand?
My 4 pound 9 ounce newborn, who now stands at eye level with him Mommy, holding out his hands and requesting “up” as he did from the time he could stand-
Despite the fact that to my dismay, I can no longer physically lift my boy, I’ll always be there to wrap my arms around him…even as he towers over me, I’ll be there.
To love and protect him...To advocate and teach the world about the beauty and wonder that is my boy.
If this is our forever, what a beautiful forever it will be.
Ellie Whetzel is a wife, Mom, and blogger who writes about the ups, the downs, and everything in between of life with her extraordinary son, Leo, who is on the Autism Spectrum. You can follow their journey at: https://www.facebook.com/mylifewithleo/
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