by Amy Armstrong
A dear friend sent out the following quote this week — a challenge, if you will — to truly listen and write as “The Artist Way” teaches us, in a stream of consciousness. Letting words flow and not letting the inner censor question our thoughts, ideas, and creativity, and letting what is inside truly go:
“If something inside you is real, we will probably find it interesting, and it will probably be universal. So you must risk placing real emotion at the center of your work. Write straight into the emotional center of things. Write towards vulnerability. Don’t worry about appearing sentimental. Worry about being available; worry about being absent or fraudulent. Risk being unliked. Tell the truth as you understand it. If you’re a writer, you have a moral obligation to do this. And it is a revolutionary act- truth is always subversive.” — Ann Lamott
Wow, huh? Powerful words that took a little time to sink in, but the more I thought about it the more I realized that with Mother’s Day inching her way toward me, I needed this very quote to be able to write with vulnerability and emotion.
At some point, I have no idea when, it became embarrassing to call yourself “a mom” or “stay-at-home mom,” and women felt judged (even if they weren’t) by other women if their definition was “mother.”
I looked up the definition of “define” (typing that makes me laugh), because when I speak to groups, doctors, people in general, I ask that they not define my daughter Larkin by her diagnosis.
Please do not call her ”Down’s kid” or “a Downsie” or “Down Syndrome child. She also has seizures, but you wouldn’t call her “seizure kid” or “seizure child.” Define her by name, gender, hair/skin color, but do NOT define her by diagnosis.
She is Larkin, and she happens to have Down syndrome.
I am not alone in this battle for people-first language, and there are many advocates who wish to have their loved ones defined by something that empowers them instead of reducing them. Kind of like when people use the term “normal,” which always makes me raise my eyebrows and stare until they realize they have just insulted my child.
So the definition of “define” is to “give description.” Some synonyms: assign, call a spade a spade, decide, label, lay it out, nail it down, name, prescribe, represent, specify, spell out.
Then I looked up the definition of “mother:” Part of speech: noun. Definition: female person who has borne children.
Might want to ask the myriad of mothers who adopt, foster, and love children they did not give physical birth to. Just, wow.
But the definition redeems itself as we move along into the main entry: Care. Part of speech: verb. Definition: tend to. Synonyms: attend, consider, foster, keep an eye on, keep tabs on, look after, mind, mind the store (this one makes me laugh), minister, mother, nurse, nurture, pay attention to, protect, provide for, ride herd on, sit, take pains, tend, treasure, wait on, watch, watch over.
I define myself as a Momologist. It’s my trademark (legally too), as I made it up after realizing that Larkin’s Neurologist, Hematologist, Cardiologist, Ophthalmologist, Oncologist, along with the thousand other doctors in her life, knew a lot about diagnosis’s but I know this child — and I trump all.
I define myself as a mother and I am empowered by it.
Becoming a mother allowed me to forgive and have empathy for my own mother, as I learned that she did the very best she could. I think I have all the very best parts of her and my father represented in my life.
My teenage son and I went to Mother’s Mass recently, and the monsignor asked the question,“Why did God make mothers?”
My son leaned over and whispered, “To rag on us,” so he will agree with the synonym “ride herd on.”
Being a mother to a 14-year-old requires a lot of watching over, riding herd on, ragging on, mind the store, keeping tabs on, and a whole lot of “I will grit my teeth and love you in spite of the teenager you are.”
However, I am confident that he will turn out to be a decent human being if I keep on keeping on just like I have all of his life, and one day he will forgive me and have empathy.
Becoming a mother to Larkin changed my life profoundly. The very definition of “mother” changes when you are given a child with special needs. I don’t say that as if I was handed a halo and super powers at the same time she was placed in my arms.
I earned those super powers and as for a halo, well …. anyone who knows me would fall down hysterically laughing at the very thought of me with a halo.
I quickly learned how to advocate and take control of adverse situations we were thrown into. I can clearly remember the very first time I felt the shift within me, and it came from absolute lack of control and terror.
Larkin’s diagnosis of Down syndrome took a while, because she didn’t have soft markers. Plus, we had a DNA test that said she didn’t have it. The only words I could get out of my mouth once the genetics doctor and I were alone were “her heart her heart her heart,” said with clutching sobs out of a mouth that suddenly felt like it was filled with cotton.
Fast forward to a small, dark, warm room with a table and a large humming machine. Two techs. A father scared out of his mind sitting hunched over on a chair by the door with his head in his hands.
A mother lying down on her side on that table with her naked infant cocooned to her. Sharing soothing words and kisses as the techs begin to roll a wand over her infant’s heart.
Watching the machine and seeing two red, pulsing holes in her infant’s heart. Glancing at daddy, who seemed broken by his inability to fix the situation. Listening to the techs whisper and measure the holes. Shaking with worry until the heart doctor told us surgery wasn’t necessary unless the holes didn’t close on their own.
I grew in that moment. I became defined in that moment. I changed in that moment. I became stronger in that moment and in during the scarier moments that came later.
Being a mother is an amazing journey, and before having my first child, I had wonderful role models to emulate. Friends who have children that I love as if they are my own. My 18-hole golfing group is filled with women who shared their friendship, knowledge, prayers, hugs and tears, and always had my back when I felt so alone at times.
Girlfriends who love me and kept sending invites that included me in everything, no matter how many times I said no or couldn’t attend because we were in some type of crisis. My sister who shows up when I am not expecting it but she always knows when I need it.
The definition of mother means “care.”
Mothers of children with special needs, all of whom I met via this crazy winding road. Mothers who are just like me and handle what they have been given with grace and faith. Mothers who step outside their own lives to lend a hand, an ear, hugs, jokes, and sometimes a swift kick.
Mothers who stand shoulder to shoulder with me in the war we sometimes wage against whomever stands in our way. We write books, blogs, and make phone calls to help those who might be going through the same problems we are.
Mothers who have stepped out of their comfort zones to answer the call to adoption and foster care. I coined a phrase during an interview that best described why I am working to build Larkin’s Place, and it extends around to embrace all who take a stand — compassion shows us our passion, which leads us to action. Hearts open wide to care.
Mothering extends itself to children who, while we may not have birthed them, we nonetheless see as part of our tribe. When we see them doing something dangerous or rude, we intervene or correct them.
Even when we roll our eyes, get advice when we don’t want it, and at times feel like we are 12 all over again there is only one person we can ever call “mom.”
We all mother each other, even though we may be peers and role models. Mothering each other’s spirits, lives, and journeys no matter what they may be.
Taking care of each other moves beyond a sisterhood, and it becomes our very nature to watch over and protect each other like a mother does. Building each other up and nurturing if others try to tear it down.
I just received an invitation to my high school class reunion which I will not be attending, because I was so tormented by most of the girls I went to school with. That is why it is so important to me that I teach my daughters to be strong and kind because as women, we need each other’s care.
There are some things that are exclusive to us as women. We go to the bathroom together when we are out, dance in groups with abandon, call each other when we are beyond angry with our spouse/child/boss/driver in front of us. We are there for each other with baby showers, birth, death, and all things in between.
We care for each other.
I am a mother, and it defines me.
Amy Armstrong is is married to Andy Armstrong and has four children: Chase, 14; Larkin, 4; and twin infant daughters Brin and Erin. After the birth of Larkin, who has Down syndrome and a catastrophic seizure disorder, Amy became an advocate for children with special needs - and all needs. Her vision to create a a multi-generational, all-inclusive play space in her community will become a reality with the upcoming construction of the new Champaign County YMCA and Larkin Place’s at the Y.