"Dake": A Sister's Journey to Speech
The only thing my daughter ever did early was enter this world. Jessie, my second child, was born on March 14, 2002, after a harrowing pregnancy. Doctors decided to deliver her at 35 weeks; she weighed only 3 pounds 12 ounces. At that moment, I could never have anticipated the impact that this tiny lady with her head of beautiful curls would have on our lives.
Jessie made her home in the NICU for ten days, until she was a "robust" 4 pounds 2 ounces. Like all new mothers, I stumbled bleary-eyed from feeding to diaper change. She was a phenomenal eater and gained weight at a normal rate. Having experienced new motherhood four years earlier with Jacob, I found there was an ease and rhythm to her care. Everything seemed to be on course despite her scary start.
As the weeks went on, my mother's-instinct siren began to sound. "Jacob tracked my face at 6 weeks," I said to myself. I vividly remembered the sweet sound that was Jacob's first giggle; yet, at 3 months, Jessie was deafeningly silent. And rolling over? Forget it. Jessie was going to lose that race as well. Parents of second children are often warned not to compare the two; however, the differences between Jacob and Jessie were astounding and cause for my ever-growing alarm.
At 5 months, we found an amazing pediatric neurologist, who sent Jessie for an MRI. He used a variety of medical terms when he explained his diagnosis -- "microcephaly," "hypotonia" -- and said she had developmental delays. He advised us to begin early intervention. And so, with cautious optimism, we began the "it takes a village" chapter of our lives.
The next two and a half years were a virtual revolving door of physical, occupational, and speech therapists. There were Mindi's stretches and exercises; Nafeesa's pegs and blocks; and Jenny's microphones and bubbles.
Even with all the hours that her therapists clocked, big brother Jacob seemed to be the "expert" who garnered the most results. I was reassured that Jessie could see when her eyes followed her energetic brother whizzing by; I knew she could hear when she turned her head toward his adorable raspy voice, and laughter finally erupted from Jessie's little belly when her brother tickled her with extra verve. Jacob seemed to be the perfect medicine for his sister, which, in turn, served as a balm for my aching heart.
It goes without saying that I had my difficult days. I watched as friends of mine gave birth to children who, one by one, would fly through milestones while my daughter took her time. Jessie would look as though she was ready to make one of those important achievements and then take six months to actually get there. Jessie did finally crawl at 18 months and then walked at two and a half years. But the babbling and the first words still eluded her. Our doctor then added a new word to my family's lexicon: "apraxia." Apraxia is a neurological disorder; Jessie knew what she wanted to say but couldn't coordinate her thoughts with the parts of her body needed for speech.
I was always open and honest with Jacob about what was going on with his sister, and when I would say to him, "Don't worry, she'll catch up," I was never being untruthful with him. That is what I believed -- well, what I hoped. But my son, at age 9, was extremely perceptive. Deep inside he was fraught with worry, fear, and, perhaps, a little bit of embarrassment. And so, out of the blue (but probably a long time in coming), the day arrived when those emotions came roaring from his gut like a raging river through a broken dam. He tore posters from his bedroom wall and knocked books from the shelves and cried out, "What if she never says 'Jacob, I love you?'" At that moment, my heart, which had become accustomed to aching, began to bleed. My own suffering seemed to shrink in comparison with the pain my son must have kept obscured from my eyes for so long. So I held him tightly, I counseled him, and I reassured him. I was also filled with newfound resolve to ensure Jessie would shout her big brother's name -- and do it soon.
Reaching Towards Progress
Over the next two years, Jessie continued to work with exceptional speech therapists, who understood that a Goldfish cracker was a great motivator for her. One doctor suggested that omega-3 fish oils had been shown to help with speech development. I quickly added that to Jessie's diet. A therapist told us to use an electric toothbrush to stimulate her mouth; I ran to Target to purchase one. We used picture cards; we tried a speech-therapy technique known as "PROMPT;" and, as usual, we talked incessantly to her. Somewhere close to her fifth birthday, Jessie had mustered a few-word vocabulary, which included "muh" for "more" and "bahbah" for my father, "Papa" Mike. She picked up "Mommy" soon after, which, for a fairly unreligious woman like myself, was a spectacularly spiritual moment. Daddy had to wait a while longer to hear his name uttered, but he, too, finally had his day. And Jacob, the big brother who had devoted countless hours to making his sister laugh, patiently waited his turn, although I knew inside that he was as desperate to be given this gift as I was for him to receive it.
Ironically, with all that anticipation, Jake and I almost missed it when it finally happened.
The summer after Jessie turned 5 years old, the three of us spent a lot of time in Jacob's bedroom dancing to songs on his iTunes playlist. Jessie and I would often take a seat against the wall to watch Jacob dance for us. On a muggy Monday afternoon in July, I turned to my daughter and asked, "Who is dancing?" A little voice responded, "Dake!" Although an uninformed observer may have remained ignorant of what had just happened, to Jacob there was no mistaking it. His sister had finally called him "Jake." In the moment that Jessie anointed him "Dake," I saw the weight lift from his young shoulders, and he continued to dance; it was clearly a dance of joy.
Originally published in the August 2012 issue of Parents magazine.