My daughter may have needed speech therapy, but her speaking at all is a priceless gift

This First Person piece is by Amy Boyes, a writer and music teacher living in Warman, Sask. For more information about CBC's First Person stories, please see the FAQ.  

My daughter Madeline didn't say a word until she was nearly two. When she eventually talked, she missed many words in her sentences. For other toddlers, this delay might have seemed worrisome, inexplicable even. For Madeline, it was a victory. At least she was talking. And as a parent, I perhaps didn't react with the alarm other parents might. After all, when you're worried if your child will survive the night, caring about prepositions seems trivial.

She spent time with a speech therapist who tirelessly worked with her, telling her stories and acting out the plot.

By the fourth repetition, Madeline could understand and recap the action: "Tiger dirt in his back he towel and soap get all clean bathtub." 

She would spout off this information with a chuckle in the back of her throat, and the sound was music to my ears. 

Madeline was born 16 weeks premature. Babies are not supposed to be born that early. At 680 grams, she couldn't be cared for like other babies and she couldn't be put back where she came from. Although outcomes have improved dramatically in recent years, many surviving micro preemies still experience severe disabilities or developmental delays.

I lived the first days after Madeline's birth in shock. With no underlying conditions or warning signs, my pregnancy had come to a horrifying end and Madeline's condition quickly turned dire with infections, organ failure, and lung inflammation. Her tiny little body only functioned because of machines that kept her alive. 

As the severity of the situation became clear, I began to accept Madeline's death as inevitable. I hadn't pictured a loss after birth, but that's what would have been — a labour-in-vain, a miscarriage, a "not-meant-to-be" as some people infuriatingly say. I had always thought losing a baby might happen early on — 12 weeks or earlier when miscarriages are more frequent. A splash of blood and then, all over. 

But a birth, followed by a death, seemed the cruellest loss of all. I would have to watch her give up. At least if I had miscarried, I wouldn't have to see her fingers claw when needles were sunk into her veins, or listen to the alarms wail when her oxygenation plummeted and her heart rate dropped down to nothing.

Every day, for weeks, I would memorize Madeline's face through the gap in the incubator's blankets, just in case she gave up before my next visit. Hers was an odd face — eyes still fused together, hair growing on her forehead, and skin barely formed over blood vessels. It seemed unfathomable that she would ever look like a newborn, that she would grow into a little girl.

She improved gradually and sometimes had setbacks, but over four months, Madeline's body grew strong. She was discharged from hospital with years of follow-up appointments ahead.

At first, the specialists focused on Madeline's vital organs. They scrutinized and qualified, assessed and diagnosed. Could she see? Could she hear? Would she ever walk? Abilities and deficiencies were mulled over. Therapies, treatments, and tests were prescribed and scheduled.

As Madeline reached developmental milestones and was discharged from follow-up programs, I began to breathe again. Scenes of euphoric first steps and uproarious bath games replaced frightening memories of the hospital. I stopped panicking. By the time Madeline was enrolled in toddler speech therapy, I was scarcely paying attention to yet more appointments. 

"Madeline, why does the tiger need a bath?" her speech therapist asked her.