By Darrah Le Montre
If you’re alive, fertile, in your 30s and live amongst other human beings, chances are, you’ve been told: “until you have a child, you just don’t know what it’s like.”
I was told that repeatedly before having my daughter, and inevitably, I was left feeling impotent and unimportant. As though, I was incomplete if I didn’t have a child.
And, as un-P.C. as it may be to say this, I was incomplete. Having my daughter gave me hope, strength, joy, peace, utility, faith, dreams, purpose and an identity. I can’t promise the same for any other woman or man. I just know that this is my truth.
Furthermore, I can say with all surety: “unless you’ve had a child with special needs, you don’t know what it’s like.” And you never, ever will.
When my daughter was born, my main concern was that she had all ten fingers and toes and that my tits would produce enough milk to be part of Los Angeles’s de rigueur Breastfeeding Mommies Club. I wanted the baby weight to slide off like melted butter. I wanted to know what to do through osmosis. I wanted my own mother to stay with me longer than the week that she did. (Glorious as it was, in my new role, suddenly all I wanted was my own mommy.)
And, lucky for me, my daughter has all ten fingers and toes. She has a gorgeous face, a darling, healthy body, big round Disney eyes, a harmonious demeanor and she also has a very rare disease called Coffin-Siris Syndrome. She’ll live a long and bountiful life. But it will be totally different from other “typically developing children” because she’s unique and perfect, but different nonetheless. While I put no limitations on her, I’ve already “come to Jesus” and I know the potential struggles she will face.
I have no fantasy that the “typical mom” lives on Easy Street. Most moms are busy as fuck. They schedule doctor’s and dentist’s appointments and carpool to soccer and pack lunches and give occasional blowjobs to their husbands.
But when you have a child with special needs, you spend 16 hours a week in therapies. You go to the hospital more than once a week. You get blood drawn and ultrasounds and tests nobody’s heard of. You spend a lot of time explaining to people what Whole Exome Sequencing is.
Not a day goes by that you don’t celebrate some victory that is taken for granted by most parents. (Today, my daughter picked up a crayon and I was overjoyed.) You become obsessed with the idea that you can “cure” or “fix” or “will” your child into normalcy. You can’t.
All of my perfectionism is wrapped up in helping my beautiful daughter achieve her next milestone.
But, her life is not about my shortcomings. It can’t be. My flaw would ruin any fun we have if I only obsessed over how to take her to “the next level.” Still, it’s something I think about almost every time we sit down to play.
Almost every activity becomes an exercise in fine motor skills and coordination. Almost every walk becomes an opportunity to desensitize her sensory overload. Almost every bedtime reading routine becomes a chance to teach her where the duck is. Where’s the duck! Where’s the duck!
Some days I lie down and let her watch educational cartoons for a half hour and rationalize that it’s giving her a break. It’s good for her. She loves music and most special needs kids watch more TV than other kids their age. I get defensive when strangers ask why I bring an iPad into the grocery store. (First of all: back off, it’s not your business. Second of all, unbeknownst to you, my daughter is developmentally delayed and she gets overwhelmed and bored simultaneously.) Give me a break!
More than anything, I feel worried and hopeful simultaneously. I worry she will be non-verbal forever. I worry about her being taken advantage of. It keeps me up at night. I worry that some people don’t fully grasp the extent of her fragility. I worry that I’ll die and not be able to take care of her for the rest of my life. I worry that she’ll be bullied at school when she’s older. I worry that she’ll be bullied at work. I’m hopeful that none of this is true.
I also celebrate her existence in everything we do together. I love cheering her on! I love rubbing her chest where her heart is and saying “heart to heart forever,” before bed. I love singing to her and letting her head fall back into my hands as she rests, cradled by my love and our forever routines. I cherish her smiles and her spontaneous giggles. I miss her so much when I’m not with her. I sleep with her pajamas in my bed because they smell like her.
I adore when I haven’t seen her in a couple hours and she clobbers my face with her sweaty palms. It’s her way of saying ‘I missed you, Mom.’ I don’t even care when she sneezes in my eyes.
I never, ever thought I’d love being a mother like I do. I used to joke “I can’t even keep a Chia Pet alive!” But somehow, I have risen to the occasion.
And, who knows what tomorrow will bring? Not me, that’s for sure. Only God knows for sure, and as long as I stay centered in my faith, my daughter benefits and the world keeps spinning and my gratitude remains intact. Before I know it, she’ll be wishing I could stay longer than a week, to help her care for her little one. Who knows? Until we cross that bridge, I just won’t know what it’s like.
Darrah Le Montre is a writer, devoted single mom and student at UCI. Her work has been published by Marie Claire, Cosmopolitan, The Fix and SuicideGirls, among others. She’s obsessed with Cracker Barrel biscuits, country music and all things Southern. Join her monthly e-newsletter Darrah’s Club!
Follow Your Bliss…xoxo