Getting to know our girls

Nine years ago, I was six months' pregnant with twins when my husband and I learned that the babies had mysteriously stopped growing. I was in the hospital on bed rest within hours. Around the clock, nurses monitored their fetal heartbeats.

Under these circumstances, we made our first acquaintance with Baby B, whom we later named Maria. One night, as the monitor found and repeatedly lost track of her heartbeat, doctors ordered an ultrasound and discovered baby Maria, busy doing back flips in her amniotic bath. At first glimpse, and ever since, Maria has been someone you feel you know just by looking at her. We did not see the other twin, Baby A, that night, and as it turned out Michaela remained somewhat elusive for a long time after.

My husband Michael and our son Benjamin spent evenings with me at the hospital. I think it helped that Benjamin's 2-year-old mind could not share in what was happening. When he was with us, we returned to the simplicity and contentment of his first two years. The rest of the time, we were full of apprehension about what the future would bring.

On the morning of June 1, at seven months gestation, the doctors decided that it was time for our twins to be delivered. Over the previous month it had become clear that keeping the babies inside carried one set of risks, while delivering them carried another. The doctors had decided that the relative risks now favored delivery.

We knew that the babies would be terribly small and fragile, and because of this, the delivery was by Caesarian section. The obstetrical team set to work, and two teams stood by to resuscitate if needed. Michael looked on, but surgical drapes blocked my view.

Very soon, cries rang out, and Michael called to me, "She's pink!" As I realized this meant that the baby could breathe, I cried too, with relief. When the second set of cries sounded from Baby B, I almost laughed. It was astonishing that these babies -- 11/2 pounds apiece -- had arrived with any of the normal fanfare. But they had.

The days, months and even years that followed were anything but normal, though. Not having been one to push myself to the utmost before, I believe that my former self was stretched and challenged in so many ways that I became, somehow, a different person.

Within the first three days of their lives, both girls underwent major surgeries. Maria's colon was insufficiently developed, causing intestinal obstruction. She required a colostomy. Michaela's esophagus was not complete -- there was no passageway between her mouth and her stomach. She required a gastrostomy so that she could be fed directly into her stomach. She also needed frequent suctioning of her incomplete esophageal pocket to keep the saliva she swallowed from overflowing into her airway.

Stunned and exhausted, we became very familiar with the neonatal intensive care unit. Maria stayed in the NICU two months before coming home, still tiny at 3 pounds. Michaela stayed for six months until her esophagus was surgically repaired. Then she, too, finally came home.

Once Michaela joined us, the medical aspects of our situation retreated, and the therapy phase began. The girls qualified for early intervention services from physical therapists, occupational therapists and speech therapists to address their developmental needs. At six months, neither was making normal progress toward sitting or crawling. Michaela, with her esophagus repaired, could only now begin the process of learning to eat.

At the beginning, and many times over the years, we've found therapists to be our closest and most helpful allies in working for the well-being of our daughters. Therapists have contributed to the girls' growth, but they have been equally important to ours. In a world that does not always notice people with special needs, therapists choose to believe that these children have possibilities that are worth nurturing. As parents, we must come to believe the same.

During this period, a neurologist determined that Maria's and Michaela's motor delays were caused by a developmental anomaly called cerebellar hypoplasia, and not by their birth histories as an earlier doctor had insisted. In addition to their other anatomical anomalies, the girls' cerebellums had not developed correctly and remained small. Healthy cerebellums give us good coordination and balance; the girls' poorly developed cerebellums leave them with ataxic movements that are jerky and uncontrolled, and balance that is uncertain.

When the girls reached 3 years of age, Maria walked with a walker, Michaela had a wheelchair, and neither girl had the oral-motor control needed for speech. Both were eligible for special education preschool placements. They entered the public school system, and the advocacy stage of our lives began.

Advocacy has been the most difficult and disappointing portion of our journey. Federal and state law mandate free and appropriate public education for children with disabilities. But in our experience, it is only through persistent advocacy that our daughters have received placements well-suited to their educational needs and readiness -- and then, only for a few years at a time.

When parents feel they must become advocates to ensure appropriate educational opportunities for their children, they add a stressful and demanding job to their already significant responsibilities. Following a long and sadly unproductive advocacy effort on behalf of our daughters and other students, we've put advocacy aside. We will put our efforts, instead, into teaching our daughters at home.

Maria and Michaela's physical disabilities will remain part of them. However, their participation in the world around them increases with each advance in their abilities. With her recent ability to use a walker, Michaela has gained free and independent movement, and even the possibility of adventure.

From our perspective as parents, the ability to speak has been the most important change in our girls. Maria's speech has emerged over the past three years. At this point, if she is with someone who knows her well and she feels confident that she will be understood, Maria expresses her thoughts with impressive quickness, clarity and verve.

Michaela's speech has emerged only this past year. As her brother and sister compete for the floor, she shouts, "I'M TALKING! LISTEN TO ME!" It's actually a pleasure to hear her join these sibling squabbles. But the greatest pleasure of all has been the deeper understanding and appreciation of Michaela -- the nearness and closeness to her -- that her language has given us.

Julie Nikaitani lives in Seattle with husband Michael McCarthy and their three children.

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