Teya’s first months I remember only in fragments. Often not chronologically, but heartfelt.
My husband’s voice interrupts my anxiety as I lay on the operating table; I cannot feel anything, although I am aware of the surgeon tending to my wound.
Our second tiny miracle is introduced to our world for the first time. “She has my grandma’s almond eyes.” I hear the smile in her daddy’s voice, despite the stress of her arrival five weeks before our scheduled c-section.
This moment is interrupted by the doctor, who is suddenly and uncomfortably leaning over the table. He looks at me awkwardly; quite emotionlessly, he says, “There is never an easy time to say this, so you might as well know now; your baby has signs of having Down syndrome.”
The room becomes silent. My heart races. There are no words.
My husband’s anger and my tears become weapons against acceptance.
Those first few days in the hospital, I remember praying, holding the five pound bundle of life we name Teya, praying desperately, that her blood test might come back negative. As tears cascade, I feel so much shame for praying this. How dare I be mourning when God has given me a beautiful healthy child? How dare I question His plan for me? As a teacher, I love every one of my kids – how can I question the worth of this precious breath against my chest? These eyes so blue I gasp at their beauty?
I hate myself for feeling sad when I should be thankful that God trusts me with this little life. Even worse, I feel alone in my grief and fear. My body shudders with sobs as I text my closest friend, I am broken.
The first time my husband comes to visit with our four-year-old, he says, “This is your punishment from God for wanting another baby.” His eyes shoot fire. I am the one who so desperately wanted another child. Incapable of fully taking in the pain of his statement, I only swell with defensive anger. “Never again call our daughter a punishment. She is a gift.” My husband does not truly fall in love with Teya until many months later, but when he does, he falls without hesitation or regret. One day as he enters the house, he smiles just at her.
“No one looks at me the way Teya looks at me. No one.” The eyes that meet mine are sincere and his heart is aglow. There is no doubt he loves her most.
I vaguely recall leaving the hospital. The staff gives me a three ring binder; I’m uncertain as to the purpose of the information it holds – more fearful thoughts, uncertain fates, traits that don’t define a person’s character. The stack of pessimistic dittos seem to address everything except what I want to know most about: how to become a great parent to a child with Down syndrome.
I am visited by my OB, who encourages me, but her eyes also pity me. I return home determined to learn. I realize that when I get busy and my husband gets quiet, we are going to be ok. We silently accept each other’s independent struggle.
I order book after book, call an organization called Early On, start my first on-line account (Instagram) and feel we are on the right path. The community of people in our world ready to help our little ones develop and prosper are amazing. As Teya grows, at times a secret hidden desire to show everyone she would out shine expectations grows in me. I have since changed my mind. Today, there are moments where milestones still bother me. But the moments when she reaches one so significantly outweighs any trepidation beforehand. I have learned that much like my older daughter, Teya will make her own choices. She is my child, my beloved, but I am not in control of her passions or ambitions. I have learned to admire this.
My mom has always been my greatest source of strength, but it is my dad who brings me the kind of comfort I need to cope with my fears after Teya’s birth. My dad is typical in the sense that if a conversation is centered around an emotional struggle, he withdraws or listens without talking. He surprises me with Teya. I am surprised it is him I need the reassurance from.
My dad comes to the hospital the following week after Teya’s birth to visit with us. She is getting a biopsy of her colon. Her little body seems all bloated tummy and painful struggle. A biopsy of her colon is ordered and we wait. My four year old daughter stays with me in the hospital. We have been separated too long already and we need each other’s snuggles and support. My dad comes every day after work to hold Teya, and by doing so, soothes my brokenness as well. “Everything will be alright.” And though it is a generic statement, it means more coming from his lips because I know he believes it.
The first weeks of our Teya’s life fill me with fear and then fight.
We are blessed; she has only a small hole in her heart and underdeveloped cells in her colon that should resolve themselves eventually. I am inexplicably thankful that she is immediately successful and passionate about nursing. I have prayed hard for this. Many nights her tiny form and mine cup each other when all the world seems asleep
The magic of these moments are no different from when I nursed my first – they are equally embraced and treasured and belong to no one but us. My heart explodes with fierce protection and love. While there are what seems like insurmountable questions looming, the truth and gravity of my consuming love are real. So despite feeling broken, often hopelessly lost, and vastly uncertain as to how this might impact my family and my marriage, I hold onto this love, especially in the darkness, where my thoughts are free and this magic between us bonds us in the security that, for this moment, all is right. I am incredibly blessed.
Several weeks after Teya’s birth I drive home one afternoon to see two pairs of small legs emerge from the bus ahead of me. I watch from my windshield, stopped behind them. The older sister waits for the younger to descend the large steps, her movements still young and awkward. Exit successful, they playfully skip and nudge one another up their driveway.
I burst into tears. Unpredictable and irrational tears.
Fear overcomes me in the most mundane moments; I assume this is a moment my girls will never get to experience together. I assume that my girls will not have the sisterhood I was imagining when I was carrying Teya safely inside. I fear that they will not share the bond my sister and I have, that they will not share secret crushes, crippling losses, or daily frustrations. I fear for my older big-hearted child Kaya and my baby girl who is all enthusiasm.
And though I am only two years into this journey, I know already my assumption is wrong. They are fiercely defensive of one another, hugging each other when tears fall and giving mama dirty looks for time outs. They are also typical siblings who fight, laugh together, steal each other’s toys, and lovingly entertain and tease one another. They are growing their own bond.
Little excursions to Goodwill are a favorite monthly trip. My daughters and I are visiting one Sunday afternoon when an elderly woman begins to coo over Teya. This is not unusual; women especially lean over her car-seated figure to delight in her baby pudge. I think nothing of it as I continue to peruse the shelf of 40 cent children’s books. A minute passes before I stand to see she is still there swooning.
“I have a daughter with Down syndrome too,” she says, looking me straight in the eye. “She is 26 now. She goes to college and does so well. There is no limit. No limit.”
Goosebumps line my arms and the back of my neck. “Thank you,” is all I can say. I know God created this moment to remind me to keep my mind and heart open to Him, and to Teya’s abilities. Too often I focus on my fears of what she may not be able to do instead of what amazing feats she can and will achieve.
A wonderful phenomenon I have noticed in the two years of Teya’s life since her birth is the miracle of parents who also have children with special needs. This woman was the first of many positive and encouraging interactions I have had with other parents. And although it may seem trivial, Instagram too has enhanced my hope and faith in all my little one is capable of. The community of hearts reaching out towards one another is immeasurably large and kind.
After Teya’s diagnosis, I was repetitively met with a smile and this phrase: “If anyone would have a baby with Down syndrome, it’d be you.” This sentiment, altered minutely, has been spoken to me by nearly every colleague, family friend, and student I know.
In the beginning, I began to resent it. I felt anger, resisted the urge to snap back, “how do you know!?” I was still so encumbered by my own doubts and misconceptions that I did not know how else to feel.
In hindsight I have three thoughts.
The first is my students, family, friends, and fellow teachers are right; I know no one else with as big a heart for others. I know no one else that loves without boundaries or judgments. I am grateful and yes, proud, to be the mama to an incredible child. Diagnosed with Down syndrome or not, she is our Teya. She is driven by heart and stubbornness. She is adorable and naughty in the same five minutes. She is no different from any other child in these aspects.
The second thought is that there is no right thing to say to a new parent who had a different hope and expectation for their child. I don’t know that anyone can universally comfort someone who has learned their child will endure surgery, or divorce, or epilepsy, or being paraplegic. There is no trained response that can speak to a person’s heart. I am a firm believer in being a great listener, and I truly believe that is all a person can do (besides hug).
The third, and final thought, is that our children are gifts beyond measure. I like to think that God chooses each of us parents for a reason. We are certainly inconceivably blessed to be gifted with this adventure and an inspiring small pudgy hand to accompany us. Have faith new parents. This journey is truly for the lucky few <3
Bio:
A Michigander and outdoor enthusiast both describe Mae Leigh. Mae Leigh is a high school teacher, wanna-be farmer, happy wife, and ecstatic mama to the most incredible blessings of her life: Kaya Lou and Teya Leigh. Mae Leigh is an avid gardener, camper, animal lover, reader, and project busy body. But by far, relationships with our Father and the people she loves (family, friends, and students) make her life amazing. Mae Leigh says “Perspective, I’ve learned, is everything”. Her favorite quote is from MLK Jr: ” Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.” This is her mantra for going forward: light and opportunities for compassion are everywhere if we just seize the moment to learn and teach one another with kindness in our hearts. Follow along on Instagram @maeleigh_perry
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