When Sarah Smiles 

On Mother's Day, 2004, my husband and I were in Pretoria, South Africa, visiting our daughter and son-in-law, their toddler, Grace, and newborn Sarah. We met Sarah in the Neo-Natal Intensive Care Unit at Wilgers Hospital, where she lay attached to monitors.

Born with three holes in her heart, the problem had been detected before birth. Because this condition is a marker for Down syndrome, further tests were done. The expected baby did have DS. Although shaken by the diagnosis, the parents immediately established a positive attitude for family and friends by declaring, "This baby is still a gift; just in different wrapping." Both sides of the family eagerly awaited the birth of the child we already loved.

Sarah came home from the hospital at three-weeks-old. Lacking the strength to breast or bottle feed, she took formula and medication through a tube, and was attached to an oxygen monitor. If her oxygen level dropped too low, a buzzer sounded. She did well on her own and needed help only a couple of times. She never "turned blue," as we'd been told she might.

Pride and admiration spilled over when I watched my daughter care for this infant. The nursing sisters had taught Mommy how to change the tube, and she did it with speed and precision, causing Sarah the least amount of trauma. Within a week, we all relaxed a bit and began treating Sarah like any newborn. She was a baby first, an invalid second.

When Sarah was three-months-old, her cardiologist said the time had come to repair the heart. Family, friends, and acquaintances formed a prayer circle that wrapped itself around the world via the Internet. The surgery went well, and the tiny heart began functioning as it should. A day later one of Sarah's lungs collapsed and doctors began a treatment they warned might or might not be successful. We collectively held our breath and prayed. She rallied, but we later learned that she almost didn't survive. After three weeks in intensive care, she went home.

On her arrival back in this country at six months, Sarah began working with a speech therapist and physical therapist. She met their goal of crawling before age one, said her first word, "Bye," at fourteen months, and she walked at eighteen months. At twenty-eight months she shouldered her pink backpack and climbed aboard a school bus to the public school system's Special Needs class for her age group. After only a week, her teacher, assistant principal, and therapists were impressed; their consensus being that Sarah is very bright. They and her parents have high expectations for her and believe she will do well in an integrated classroom when that time comes. She knows more than 100 signs and has more than 100 words in her spoken vocabulary. Her favorite word right now is No.

When Sarah earned five gold stars in school and came home with a prize: PlayDoh, chosen by the teacher because Sarah seemed to have an aversion to anything messy, we all laughed. As her sister Grace said one night at dinner when Sarah wiped her face and hands with her napkin and then laid it down, "Sarah has nice manners."

Yes; life is often messy, but we aren't concerned with what Sarah can't do; we're proud of what she can do. She's now in her second year of pre-K. Each advance she makes is a blessing. Her special gift right now is her ready smile. Her message, I believe, is that we all need to lighten up and put on a happy face. We do, each time her dazzling smile and sparkling blue eyes remind us to do that. When she waves her little hand and says, "Hi," she's irresistible.

Emily Perl Kingsley, the mother of a son with DS, explained in an essay titled Welcome To Holland that when you become pregnant it's like planning for a trip to Italy, a place you dreamed of going. But when your baby is born with DS you feel as if something has gone wrong. You're in Holland instead. "After a while," she says, "you learn that Holland is not a horrible place; it's just different. In fact, it has much to offer. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things, about Holland."

I've been to Italy and Holland. None of their treasures is as charming and captivating as four-year-old Sarah.

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Sarah: Lighting The Way

(a follow-up)

We're having a baby, a happy couple announces.
Wonderful. Do you want a boy or a girl?
It doesn't matter, as long as it's healthy.

That age-old sentiment is well-meaning, but when the baby arrives with health problems, do the parents abandon the newborn? Of course not.

My daughter and her husband were living in South Africa when their expected second child was diagnosed with Down syndrome. When they informed family and friends about the diagnosis, they added, "This baby is still a gift, just in different wrapping."

Although I would not have expected anything less of them as parents, their minds had to be eddying through a storm of emotions and fears. With an immense geographical distance between us, I could not gauge the extent of their feelings, but I felt confident that they could handle whatever came their way. This baby, who had a heart defect that would require surgery within weeks of birth, was in the best parental and professional hands. The heart condition became their primary concern; dealing with Down syndrome would come later.

Shortly after Sarah's birth, my husband and I noticed a couple in a restaurant who had a toddler with Down syndrome. Chatting with them, we told them about our infant granddaughter and learned that their little girl had undergone heart surgery, too. Seeing the healthy and happy child gave us confidence that all would go well for Sarah.

There were complications after surgery, but Sarah rallied and her heart now functions normally. Back in this country at five months, she seemed eager to get on with life. She wiggled across the floor when laid on her tummy. One could hardly hold onto her when changing her diapers and clothing. She crawled at eleven months, said her first word at fourteen months, and walked at eighteen months. At twenty-eight months, she shouldered a pink backpack and eagerly climbed aboard a school bus to the public school system's Special Needs class for her age group. After only a week, her teacher, assistant principal, and therapists were impressed; their consensus being that Sarah is very bright. They and her parents have high expectations for her and believe she will do well in an integrated classroom when that time comes.

Most of us bemoan the fact that children grow up too quickly, so I'm comfortable with Sarah moving at a pace that's right for her. Now in her third year of pre-school, she knows the basic colors and recognizes almost any animal on sight. She can count to five alone and to ten with help. She recites the ABC rhyme; she loves to dance; likes to share a high-five; loves her Barbie doll and Dora the Explorer, brushes her teeth by herself, and "reads" books aloud. She likes giggling with her older sister and making her younger brother laugh. She enjoys going to the school library, choosing a book and taking her library card to checkout. She cheers herself and others for a job well done with a loud "Yay," as she claps her hands. She does her chores: feeding the dogs and carrying dishes from the table to the sink. At table, she expects everyone to hold hands while she says, "Amen."

Sarah brightens a room when she walks in. Children and adults seem to gravitate toward her (her mother silently calls her Queen Sarah). Two boys currently vie for her attention, but she's true to only one. She captivates bystanders with her big blue eyes, her corn silk blonde ponytail or braids, her disarming smile, and sunny disposition. Well, sunny most of the time. Belying the myth that people with Down syndrome are always cheerful, she has a solid knowledge and use of the word no. She exerts a strong will, independence, and spunk. She knows right from wrong and occasionally gives herself a time out for unruly behavior.

Having Sarah in my life has altered my own behavior. At an earlier time, I didn't pay attention to or really see people with Down syndrome. Now, I recognize beauty in their distinctive features, the mischief in their eyes, and the honesty of their smiles and laughter. I chat easily with the friendly young man who pushes my grocery cart to the car. I talk about reading with the teenaged girl who shelves books at the library. I understand that people with Down syndrome are happy being productive members of society. My husband and I attend Special Olympics and cheer each athlete's performance. We've participated in Buddy Walks and in Barnes and Noble's Down Syndrome Awareness Day. Confident of Sarah's capabilities and willingness to learn, we contribute to her college fund.

Sarah's determination reminds me to be patient when waiting in line at the bank or when an automated telephone voice puts me on hold for ten minutes. If the interim music is not to my taste, I remember that all birds sing, not just those with pleasant voices.

Sarah's energy propels me to keep active. When my grandchildren ask me to play with them, I'm ready. My time could not be better spent. Having a child snuggle up with a book and fall asleep on my lap is as luxurious as life gets.

There's an adage that God gives children with special needs to special people. I'm not convinced that's true, but I believe these parents become more understanding and nurturing because of that child. I admire my daughter and son-in-law's calmness and steady hands as they make decisions regarding Sarah's future and use those same skills to guide their other children. Through their example and by watching Sarah's steady progress, I'm progressing, too. At seventy-plus, I'm still learning how to live, and how to see.