“I have a son, who is my heart. A wonderful young man, daring and loving and strong and kind.” ~ Maya Angelou
I’m not overly superstitious. But I still make wishes at every opportunity: when I blow out birthday candles, when I toss a coin into a fountain, when a ladybug lands on me, when I blow a lost eyelash off my fingertip, and when I see the first star to appear in the night sky. Every kid knows you don’t reveal the wishes you’ve made. And while I have never revealed mine, everyone who knows me well could correctly guess who is the subject of my every wish.
My son Jukie was born with a rare genetic syndrome called Smith-Lemli-Opitz. In addition to other challenges, SLO caused Jukie’s autism. But of course Jukie is not his diagnosis. As a boy, my oldest son is filled with joy and curiosity. He’s funny and impish and affectionate. He’s handsome and quickly approaching my height. 14 years old, Jukie hasn’t spoken a word since he was three.
Jukie was diagnosed with SLO 13 years ago. In some ways, I am glad I didn’t know then what I know now. Learning to accept a child’s diagnosis is a process, a journey for both parent and child. I wouldn’t have been ready to face the reality, which took years to unfold, and I’m grateful for the protection that my early denial and uncertainty offered me.
During those early years, I focused simply on Jukie and on all my love for him, the way we do with all children. I didn’t worry so much about him. I wasn’t too concerned with where we were “going” because I was busy melting each time his gaze met mine. Every time his outstretched arms reached for me, I happily scooped him up and plopped him on my hip. Jukie and I needed this bonding time together to prepare for tougher times ahead.
While we are not granted emotional shortcuts in life, I’ve learned a few lessons which I wish I could have shared with my frightened self of all those years ago. Although I may not have fully understood or even believed what my more experienced self would share, I’d like to imagine myself of today popping in for a visit to my struggling earlier self.
To Jukie’s young mom, I’d have said: give yourself the gift of time. Take time to grieve the loss of the boy who might have been. While grief is acute early on, it gets better. Feel your feelings, even the scariest, most difficult ones. The only way to heal is to feel your way through.
Be kind to yourself. Give yourself the same understanding you would offer a friend. Forgive yourself when you screw up. Rather than “Super Mommy,” you’re really just a mom, doing your best. Some days you’re going to fail. Allow yourself to hit the reset button and start over.
Dig deep to find the courage you need. It’s there. You will sometimes wonder if you can do it, if you can handle the challenges that come with raising this boy. His screaming stage that begins at age two will last a few years. Earplugs are a good idea. His post-surgery recovery period will be the most difficult of your life. Learn to reach out to everyone in your life for support in order to get through it.
Trust yourself – you are a good mom. Trust Jukie – he’s a great kid. Trust your connection to one another, a connection born the first moment after his birth, when you looked into each other’s eyes. That connection is never lost.
Embrace Jukie for all of his differences. Celebrate everything that makes him unique! Catch and reflect his infectious laugh in the library! Join his spontaneity as he runs off in the opposite direction than you had intended. Sprint around trees and bookshelves to see the world through his eyes. Get used to exposing yourself; people will stare. Learn the liberation that comes from letting go of anything you’re hiding. Jukie will bring you out from the shadows. It’s better in the light.
Taking care of yourself is no luxury; it’s vital. Also, you deserve it. Build happiness and peace and pleasure into your days. Take walks in the arboretum, find beautiful trails to explore on weekends, prioritize time with friends, go dancing and to the theater and to the movies and to pub quiz every Monday night! Fill your home with music. Eat and sleep well. Get a massage and a pedicure because cute feet make you feel good.
Honor the magic. Somehow you traveled 4,000 miles from your home when you were just 20 years old and stumbled across the guy who would become your husband. You got the very best one. Lean on him. Lean on each other. Lean in together. You need one another. Let all of the challenges of life with Jukie bring you together. Invest in time together. Keep “dating” each other. Laugh together. Dance together. Cherish each other. And whenever he is within range, slap his ass.
You will never stop wishing for your boy’s words to return. Make peace with this chronic grief even as a small part of you holds out hope with each wish blown silently into birthday candle smoke.
Know that it gets better. It gets great. One day you will thrive. Your blog about your experiences raising Jukie will highlight the word “thriving” right in the title. Enlist your husband to collaborate on a book which people will read and relate to all over the world. You will challenge yourself to stand in front of large crowds and share your experiences. Jukie will touch lives with his pure spirit and gentle goodness. You will feel grateful for the lessons he teaches and the love he gives. You will embrace this life, our life, with your special boy.
