By Cathy Jameson
Gosh, that smile of yours. I miss it. I miss that happy baby grin. And those sparkling eyes. And your husky voice and those perfectly round, oh-so-pinchable cheeks. Where did they go? You lit up every part of a room you walked into wherever you went. I miss that. I miss that about you and how full of life you were back then. I miss all of it.
When you started to slip away, much of your typical development was replaced. Silence fell over you. Milestone achievements came to an end. The further into the abyss you fell, milestones even seemed to reverse! It didn’t make sense. Since then, you’ve been met with every delay imaginable. Playtime? It’s a struggle. Interactions? They are fleeting. Abilities? Some are non-existent. Conversations? Those were stolen from you after your words disappeared.
What am I to do? Accept what happened to you and move on? That isn’t fair to you. You’re a worthy of more than that. Your life is more valuable than just being a statistic. Every fight and every victory I obtain for you is done to bring you justice. And peace. How I’d love to feel at peace again. Battles I wouldn’t wish on another human being are part of my mission--a mission to bring you healing.
So much changed for you and within you. What changed for me? New words I never knew existed pepper my vocabulary. People I never thought I’d ever encounter now sustain me. That’s comforting. Somewhat. Even with the knowledge I have, and with the support that envelops me, I still feel like every day is a new day and that nothing is a certainty. I’m in “go” mode at all times. Most of the time is because of unsettled fear. Fear that you could lose ground on any given day and fall further behind. I lost you once, and I’ll be damned if I lose you again to more regressions. So, I go forward. I learn everything I can. And I stand up and fight for you. It’s what I do to keep us both feeling like we’re moving forward.
Could I do more? Absolutely. Am I trying as hard as I can? You bet I am. Is it going to take a long time to do everything and then some for you? Apparently. We’re 8 long years into this, you and I. Am I ready to stick it out? Of course I will. Your life, your purpose and your well being have become a priority that I will not ignore.
These bits of your past may stay missing or fractured for awhile yet, but I have faith I will witness them again. As the rest of you works a thousand times harder than other kids have to, I see how determined you are. You will not stop trying, or doing, or trying again. Thank God for that. Thank God because I do believe you are capable and that your future will be greeted with many triumphs.
What’s it like now? Remember that twinkle in your eyes? Every now and then I get a glimpse of it. The voice I miss so, so much? It remains eerily silent. You have sounds though. I’ll cling to those sounds until I hear your beautiful voice again. Something else I cling? Your smile. When you smile, when it flashes across your face, oh boy, my entire being lights up.
Ever so slowly, the old you creeps back in. The pace is slow and sometimes painful, but we’re both so stubborn that I believe neither one of us is capable of giving up. What got us here is unfortunate. But what is getting us through it gives me the hope I need to hang on. One step at a time. Little by little, we will do this.
Cathy Jameson is a Contributing Editor for Age of Autism.