I cannot believe how quickly the last 17 years have flown by. When I glance over at you, intently focused on the television screen with unshaven stubble presently on your face, I can vividly picture my adorable, chubby-cheeked toddler.
I remember every minute of each therapy session you tolerated multiple days a week like it was yesterday–always working extremely hard to overcome significant motor delays, never giving up on hitting those many milestones at your own pace. Your ability to invent creative solutions for mobility, like navigating around the room balanced on your head and feet in a tripod formation, demonstrated for me just how resilient and determined you would be throughout your entire life. Witnessing you finally take your first steps around age three and a half, ever so carefully maintaining your balance, was inspirational and a moment I’ll never, ever forget.
Based on the expert opinion and grim prognosis we received at your diagnosis, deeming you incapable of achieving much of anything independently, I could not be prouder watching you continuously surpass all those doubts and limitations placed like heavy bricks on your 3-year-old shoulders.
While I try my best to remain focused on the positive memories and your incredible achievements over the years, I must be honest with you and with myself that I’m forever holding out hope for you to overcome the one milestone that continues to elude us–communication.
Hearing your voice someday is still my greatest wish.
I pretend it doesn’t matter whether you talk, use an assistive communication device, sign language, or any other specific method to share your thoughts, but in all honesty, it breaks my heart to its core having never heard what you sound like. I mourn for the missed rite of passage as a parent to share a hearty laugh with you as your voice cracks due to puberty–changing from a high-pitched toddler whine to the deep tone of a young man. It likely sounds selfish, but I would give anything to hear you just once call me mom or say you love me back.
Thinking of you navigating your way around a chaotic, speaking world full of rules and instructions day after day makes it hard for me to imagine what life is truly like for you. How frustrating it must be that you are unable to communicate effectively with those around you. The repetitive banging on walls, counters, doors, and yourself is your attempt to get us to try to decode what it is you are needing, wanting, or feeling. This is a behavior you tried out many years ago, and it received the desired result–attention from someone who can help you. It saddens me to think you may be disappointed in me or assume I’m not trying hard enough. I often think I know what your gestures mean, but based on your response, I’m certain that many, many times I’ve gotten it all terribly wrong.
As the days and years pass by without a single word uttered from you, I often wonder if I’ve focused too much on helping you find your voice and perhaps fixated on the fact that you must become verbal to truly succeed in this challenging world. Recently, during one of our nightly conversations, I told you I finally understand the phrase “let go and let god” and it left me with the peace I hadn’t felt in a long time. Rather than spending every free minute trying to identify and force upon you the next therapy, program, or plan to help you better adapt to the rest of the world, I will instead focus on all of the amazing things you can do now that you couldn’t before.
I will never stop pushing you to communicate, but I can acknowledge that you will do so in your own way and likely on a different timetable than mine.
As you’ve grown from a precious, feisty little boy into a handsome, capable young man, you’ve encouraged me to grow, broaden my perspective, and appreciate the simplicity and joy in every single day.
Watching you tackle every obstacle in your path and blend into a world that frequently misunderstands and judges you unfairly has taught me to be brave, strong, and courageous like you. You’ve taught me that when I’m tired and feel like giving up, I can keep going. You bring the silliness and laughter into our home–allowing us all to revisit childhood through countless hours of watching Sesame Street and lead us on adventures we likely wouldn’t have experienced.
Among all of those life lessons, the most special gift I’ve received from you is the understanding that there are other means of communication beyond speaking. It’s taken me many years to allow myself grace, knowing that no matter how hard I’ve pushed you during one therapy or another, it has always been out of love. I will always be your biggest cheerleader and believe you will leave a lasting impact on this world, come what may.
I truly believe God is using you as a vessel to teach me and possibly everyone you come in contact with about acceptance, gratitude, compassion, inclusion, and patience. (We both know my patience is thin and my temper short, but I appreciate you loving me in spite of those traits I’m still working to improve).
Being your mom makes me extremely proud of the young man you’ve fought hard to become. I am forever grateful I was chosen to guide, nurture, and love you unconditionally through this life.
Originally published on the author’s blog