One of the first questions that strangers ask when they see us together is, “Is that your daughter?” There is always an awkward pause that follows my usual response: “Actually, that’s my SON.” This unexpected answer really throws people off and their reaction is both amusing and priceless. I have to admit that I am rather proud of myself because I have just managed to divert a stranger’s nosy, none-of-their-business curiosity about my disability and focus it onto your long, Axl Rose hair.
It’s a strange answer to a strange question. Are you my child? Who else would you be? My little brother? What? I’m your nanny? Someone is going to pay good money and hire a disabled nanny? I know they know you’re my son. Anyone that is paying attention to our dynamic can decipher that. What they really want to know is HOW?! HOW did this tiny little human conceive, carry, and deliver another tiny little human?
Frankly, that is the mystery and beauty of life. Sometimes I wonder myself. HOW did I carry you in my belly for 37 weeks? HOW did I get so lucky? For most of my life, I had cursed the body I had been given but having you changed that. I was finally able to see and accept myself in a different way. My body transformed from a broken, deformed, useless thing to a miraculous, purposeful vessel.
You’re only three and in about a year or so, you will be taller than me. I know the questions will continue. So will the stares. What I fear most, though, is the time when your peers will mock you for having a mother that looks so different from the norm. The question will change from “Is that your child?” to “Is that your mother?! Why is she so little? Is she a midget?” I know my heart will break on that day because up until this point, you have seen me as nothing BUT normal.
In your eyes, I am mom and I am perfect. Your love for me has been unconditional. You do not yet know that other moms can be and are different. You are not comparing me to other moms because I am the only one that exists, or at least, the only one that matters.
One day that will change. You will learn that people can be cruel and that words can hurt. I need you to be strong. I need you to be a leader and to guide others with the compassion you will undoubtedly gain from having a mother with a disability. I need you to wipe away the tears and to stand up for what is right in this world, not just as it is relates to me/us but to how all people are treated.
You will always be my baby. All mothers say that, of course. But one day you will be a man, too. When that day comes, I want you to look back on our years together with fondness and happiness. I don’t want you to feel resentful or perhaps even embarrassed. I fear that you will wish you had had a more-fun mother—one that could run with you and go down the slide with you or ride roller coasters with you or teach you to skate or practice baseball with you… I don’t want you to feel like you missed out, like the time when I signed you up for music class but it was on the second floor and you kept repeating, “Mommy cannot go up the stairs. Mommy cannot go up the stairs.” I could tell you were disappointed but I am sure it hurt me more than it hurt you.
No mother wants to be the cause of her child’s pain. I don’t want you to feel like I ever held you back in life or like you were not given all of the best opportunities because of our resources or the fact that you were raised in a single-parent home. I don’t want you to feel like I was a burden or that you were given too much responsibility too early because you were able to do more physical tasks than me. I don’t want you to feel like you will HAVE to take care of me in my old age. I want you to WANT to care for me, not as an obligation, but because you still see me the way you saw me at three.
They say that men will seek a partner that is just like their mother. If that is the case, I hope you find someone that is ballsy, quirky, strong, tenacious, sensitive, intelligent, funny, sarcastic, and of course, gorgeous. Wink. The truth is, I don’t always see myself as these things. My hope, though, is that through our time together, you will. Even more important than finding a partner that has certain qualities is that you, yourself, grow to have a strong foundation in the values that have served me well in life: working hard, creating goals, showing empathy, having an open-mind, and above all, proving the nay-sayers WRONG. If I had listened to every “…but you can’t” in life, I never would have learned how to drive or moved to Los Angeles or worked at the GAP or become a special education teacher. Certainly, I never would have gone on even one date, let alone become a mommy. To all our family, friends, and all the haters-in-between, yours was the jaw-dropping birth of the year!
When you are facing a new venture and odds are against you, remember that mom couldn’t even WALK through the snow, 10 miles, uphill both ways. I had to do it in a manual Quickie 2 wheelchair, with no GPS to guide me and no Google to ask for directions. Of course you will have your own experiences that will form the person you will ultimately become.
The truth is, we all have a path in life but most of the time, none of us know where we are headed. Don’t be afraid to take the route that everyone else is telling you is too curvy, swirly, dark, and scary. Mommy has a flashlight for you and a packsack full of your favorite Little Bites blueberry muffins and Honest apple juices.
I hope you will always be surrounded with love and that you will remember that I was your first. When people ask, “Is that your mother?!” I hope you will answer with pride. Most importantly, I hope the therapy bill isn’t too high…
I LOVE YOU!
Marisela Carvalho was born in Venezuela and immigrated with her family to the United States at a young age. She graduated from UCLA and is a former special education teacher. Currently, she resides in the Bay Area and is a stay-at-home mom who is focused on raising her son. She hopes to return to school and achieve her ultimate goal of becoming an Expressive Arts Marriage & Family Therapist. She has Osteogenesis Imperfecta.
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