Three years ago, we were preparing to have a baby. I had endured a pregnancy full of scrutiny, invasive tests, and weekly monitoring. After having suffered three pregnancy losses, I had been labeled “high-risk”. I had become a specimen to be observed. I lost my identity as a mother-to-be. I became a case study out of a medical book. I learned to fear the anticipated end result instead of excitedly awaiting our child’s arrival.
Three years ago, our daughter was secretly prepping to be born two months early. She knew it. My body knew it. My doctors had no clue it was coming. Despite an ultrasound check just two days before her birth, no pre-term labor was detected.
The past three years has taught me more than I could have ever imagined before embarking on this journey.
During the past three years, I found a mental endurance that was hidden within the folds of my mind. Since the day Evelyn was born, she’s had physical delays. From within her plastic box in the NICU, we worked with physical therapists to stretch out her tightened joints. We reached through the holes in the plastic–barely big enough for our adult-sized arms to fit–and gently took hold of her thin limbs to exercise them every time she had a diaper change. In other words, every two hours. Day and night. Missing a time could have had dire consequences; the progress we made could have been reversed. Her wrists could tighten again, her knees could lock themselves straight.
There has not been a day that our daughter has not been under the care of a physical therapist. One-thousand ninety-five days later, we find ourselves still engaged in this practice. It may look different than in the early days–now we encourage her to walk, teach her to climb stairs, coax her weak muscles to be stronger–but it is never ending. I am tired. I am frustrated. Many days, I want to quit. But, we’ve come this far, and the price is too great. I push on through the exhaustion when I wouldn’t have guessed I could have.
During the past three years, my patience has grown. Watching Evelyn try to take a few steps only to fall time and again makes my heart weary. As her mother, I want nothing more than to help her walk. As a human being, I want nothing more than to never have to endure another bruise on her leg.
When she cries and says, I’m scared, my steady resolve keeps her going. I have to be the fortitude a toddler cannot yet have.
During the past three years, my confidence has found its voice. Anxiety has professionally intertwined with my life. It kept me from talking when I needed to talk. I kept questions to myself. I swallowed my fears.
As a mother, I no longer have the luxury to submit to my angst. When doctors told us Evelyn wouldn’t survive, I found the courage to fire them. When I went into premature labor and was told I would need to have an urgent c-section, I signed all the forms. When they told me I would need steroid shots for her lung development, I would have to drink various foul-tasting things for her safety, and needed additional inoculations for her well-being, I did them all. Through my tears, I focused on what I could control. I never questioned my choices, terrifying as they were.
When we need her daycare teachers to support her in physical therapy goals, or to let her have a walker at school, or to encourage her to practice walking up stairs, I speak up. If a child asks about her leg braces, I show my daughter how to be proud of who she is. I advocate for her in a way I never could for myself.
During the past three years, I learned how love truly has no bounds. Despite everyone always wanting a “healthy baby”, mine wasn’t born that way. She has muscle weakness, joint contractures, and gross motor delays. I would do anything to take away her struggles. Yet that is one superpower I will never possess.
Her right arm did not move for the first several weeks of her life, and it still doesn’t have the range of motion it should. Yet I love her just the way she is. Her physical being drives her persona. She is independent, tenacious, and a fighter. Even when she doesn’t want our help when she needs it most, I love the connection between her inner and outer self.
During the past three years, I learned that medicine is not always right.
Evelyn did not die in-utero like some doctors predicted she would. She was not born with severe cognitive delays. Her heart was perfect, despite one doctor declaring it defected. After extensive genetic testing, nothing was found. All the disorders they predicted–trisomy 13, trisomy 18, and hundreds more–were wrong. Her prognosis was wrong. If any of my doctors saw her today, their jaws would be on the floor.
During the past three years, I learned to be a mother. Despite a traumatic pregnancy punctuated with complications, I learned that first and foremost, I am a mother. I fought like hell to be one. I endured severe anxiety through five years of loss and grief just to hold a living baby. I agreed to one more pregnancy just because I couldn’t let go of hope. I jumped through every hoop the doctors put in front of me. I made choices I wish no one ever had to. I faced a medical community head-on who didn’t believe in us.
My daughter does not see me as a medical patient. She hugs my legs, brushes my hair, and plays silly games of peek-a-boo. We sing Twinkle Twinkle Little star and Itsy Bitsy Spider. And then we make up our own version of the songs and laugh. At times the laughter has us rolling on the floor and losing our breath. We pretend our hands are spiders. We practice walking and climbing. We play on the swings and go down slides. In the past three years, I have learned to fulfill a role that for so long was dangled in front of me like a carrot on a string.
For the past three years, I added to my life’s resume the most important role I have ever taken on. Being a mother has made me stronger. I have found my voice. Helping my child may be tough–and may require a backbone I never had before–but it is just where I am meant to be.
During the past three years, I’ve lived with a tiny human who knows what’s truly important. And she has taught me to understand it, too.
For the past three years, Evelyn has seen me for what I have been all along–her mother.