The Sweetest Gift of All

         Three days before Christmas, she came into our world without a whimper, beautiful, yet by the world’s standards, damaged. After waiting almost eight years for her, my daughter won my heart within moments of her birth. Before a full day passed, she shattered it so completely, I thought it would never heal. Jaimie, our precious girl, for whom we waited almost eight long years, was born with a form of mental retardation known as Down syndrome.

         English doctor John Langdon Down, for whom the genetic defect was named, first described the condition in 1866. In 1959, Professor Jerome Lejeune discovered the extra chromosome known as chromosome 21 that caused the defect. Since that time, scientists and doctors have found more than one form, such as Translocation and Mosaicism. The type depends on which chromosome is malformed.

         Jaimie’s version came from a defect in chromosome 23 and had only vague traces of the heavy Mongoloidian features carried by over ninety percent of Down’s patients. Even so, she faced a difficult life style. How it turned out depended on our determination as much as hers, but first she had to live long enough to come home. Within hours after her birth, her blood thickened and she seized. Three times during her first day of life, I signed procedural paperwork to keep her alive. By the last signature, my hand shook so hard, it formed nothing more than jagged lines across the page.

My in-laws arrived at our home in Maryland from California for Christmas. I came home from the hospital two days after Jaimie's birth and left her on a table under heat lamps and the influence of phenobarbitol to decrease chances of more seizures. Dazed, I barely realized when my in-laws returned to their home. Two weeks after her birth, we brought our angel home, not knowing whether being placed in our care was a blessing or a curse for all of us.

         Bruce and I didn’t realize our journey through her birth would involve all the stages of grieving. Wrapped in misery, desperation, isolation and denial, we looked among our family and friends for consolation. Not one of them had experience with mental retardation in their immediate circle. Though some had met children like our Jaimie, their consolation to us came through the much repeated and little thought out phrase, “Those children are so loving and sweet.” They meant well, but eventually it came to mean they knew no more than we about our Down syndrome child.

         Our parents offered little help and, in fact, often hurt more than comforted. They brought out the grieving anger.

         “No really, what does she look like. Is it very bad?” said Mama when I told her about her beautiful granddaughter.

         “You will have her fixed, won’t you? That way if she gets pregnant, the disease won’t spread,” responded my mother-in-law. How she could say such a thing after meeting Jaimie, I could not understand.

         Thank heavens, fathers know to shut up. Only Great Grandma Pauline offered solace. She insisted on going to the hospital, dressing in the required gown and mask to see and touch her new grandchild. She spoke in her soft German accent, telling her great grandbaby how wonderful she was and how lucky Grandma Pauline was to meet her after waiting so long. Her kindness lit a tiny flame of warmth in a heart growing cold against our relatives.

         Fear almost pulled our marriage apart. Bruce considered it his responsibility to be strong for me and he refused to speak of his emotions. In maintaining his equilibrium and guarding his temper at home, he lost his outlet for the fury building inside him. Any ill perceived comment at work sent him over the edge, ready to answer with physical violence. Unaware of his struggle outside his home, I kept waiting for him to show some sign he shared my sense of loss instead of calmly holding me and repeating everything would be okay. He shed no tears. I feared he blamed me and planned to leave me with a daughter who needed so much more than a normal child.

         At the suggestion of Jaimie’s pediatrician, we visited a counseling session for new parents. As the newest members, the counselor saved us for last. I declined to speak; she turned to Bruce. She asked if he wanted to say anything or ask a question of the group.

         The solemn quiet face I accepted over the last weeks crumpled like a sheet of thrown away paper. A river of tears flowed and hands clutched in white-knuckled fists rose covered his eyes. A moan grew to a hoarse, animalistic scream as he begged to know why? Why did this happen to our child? Had we been so horrible that she should suffer? Surely God wouldn’t be so cruel as to blame her for something we did. Sobbing brokenly, he pleaded for answers until he sank back in the chair, exhausted from releasing his grief at last.

         From that meeting we discovered how much we needed to talk, examine our fears, and work together to get through the biggest test of our marriage. Only through the tightening of our love and dependence on each other could we provide the immaterial as well as the material items for our daughter and her older brother.

         Before Jaimie came home, her cardiologist discovered a heart murmur, not an uncommon occurrence among Down’s children. The condition might affect as many as 50 percent, many of which require open heart surgery. After that pronouncement, it seemed every doctor had more heartbreaking news for us. Our baby and others like her are prone to problems involving bad eyesight, thyroid, poor immune and respiratory systems, and obstructed gastrointestinal tracts. Her two month visit proved the last straw. The cardiologist dropped the other shoe. We had to be on constant alert, checking her lips, fingers and skin tones for any blue caste. If and when that happened, immediate open heart surgery would follow. On the way home, I broke down.

         “Why is she being taken away from us a piece at a time? Why doesn’t God just take her and be done with it?”

         We rode the rest of the way in silence. There had to be an answer, but neither of us knew it. That’s when we bargained with God. It went against his Episcopalian and my Baptist upbringings, but our baby’s life made it worth a try. We begged Him to let her live and if He granted that prayer, we promised to look past her disabilities and push her to be the best human being possible. I don’t think He really answered our prayers; I think He planned all along for her to be a leader of other disabled children, to show them how to push past barriers, but it didn’t hurt to have us working on His side.

         Acceptance of Jaimie’s fate came prior to the other steps. While she remained in the hospital after my discharge, we visited her hospital pediatrician often. At the end of each visit, he always said, “Don’t expect anything, just take her home and love her.” The scheduled day of her homecoming, he repeated the familiar phrase one last time. Exasperated with his repetition, I turned on him.

         “Of course, we’ll take her home and love her! We’ve waited almost eight years for her. Why do you keep saying that?”

         “Because some people can’t love imperfect babies. They either put them in institutions and simply leave their children in the hospital and never return.”

         “How can they do such a thing? It’s their children.”

         “Disabilities don’t fit in their world. Sometimes they can’t afford the care involved. Occasionally, a parent simply can’t bear looking at their imperfections and sometimes, sadly, their position in the community is more important than a child who needs their love.”

         “Rest assured we love her, but as for not expecting anything of her, forget it. We will expect everything until she says she can’t do it.” The doctor’s face broke out in a grin. We shook hands with him and went to get our little girl. Once we finished grieving, the process began for keeping our word.

         In spite of our brave words to the doctor, bringing Jaimie home was scary. Our son brought his own challenges, but at least he let me know when something went wrong in his small world. Jaimie never made a sound, not a whimper or sigh, not even a tiny snore at night. How would we know if she got in trouble? Bruce had to go back to work. Could I sit up all night and all day until he got home?

         To our surprise, our dog, Maddie, came to the rescue. From the moment we walked in the house, she insisted on seeing her new human. Never had she given David such attention; in fact, she patently disliked him after he tinkled in her face as a newborn. Dad forgot to cover his son's lower anatomy while changing diapers. Maddie seemed to sense a difference in our second child. After a good sniffing from head to toe, she appointed herself guardian, sleeping beside her crib in our room.

         Any small movement sent the pug to my side, pulling the covers off the bed until she got our attention. By morning, I no longer worried and Maddie learned to sleep more during the day. Throughout her younger years, Jaimie used Maddie as a pull toy, a pillow and a knock over toy. The pug withstood it all, never so much as growling a warning.

         David joined wholeheartedly in helping his sister make the most of her life. The first time he saw her, he begged to hold her. Fearing he might drop her, I hovered unnecessarily. No adult ever snuggled her more securely in his arms than our son.

         “Hi, Jaimie,” he said. “Mama and Daddy said you need lots of help growing up. Well, don’t you worry. I’m your brother and I’ll teach you everything. I promise.”

         Never was a promise made and so sincerely kept. We brought in a therapist, who evaluated her, set up a work program, and trained the family as well as Jaimie. Every therapy day David ran in from school eager to learn the latest lesson. He spent hours talking and playing games with her. She clearly adored her big brother and at the age of three months, she flipped from back to stomach with his guidance. For the first three years, she reached every milestone led by David, except for speech.

         At the age of four months, on April 18th, 1979, Bruce took our son and a friend to an amusement park for Dave’s birthday. Jaimie had a terrible cold, so she and I didn’t join them. I held her steadily during the morning, but eventually laid her down to do housework. I was putting dishes in the sink when a strange sound startled me. I dropped a cup, shattering it. Jaimie, made uncomfortable by her stuffy nose, screamed at the top of her lungs, making the first noise of her life. I spent the rest of the day, dishes and house forgotten, alternately holding her to give her rest and laying her down to hear her cry. When the guys came home, I demonstrated her loud new talent. David declared it was his best birthday present ever!

         Another quirk of the Down child’s makeup is a tongue that’s too long and a mouth roof that’s too high. These traits make clear speech extraordinarily difficult. Some never learn to speak legibly and almost all have to be taught to keep their tongues inside their mouths. Weight gain is a serious problem if the child has a low acting thyroid gland. If diets are not kept in check, obesity adds to the growing list of problems they face.

         With Jaimie we discovered many wonderful traits and over the years they have far outweighed the minuses in her life. She and almost every Down child I’ve met love school. Summer is a time of loneliness for her since most friendships come from the classroom. From the time she arrives home the last day of school, she counts down to the first day of the new school year. How many parents would like to have their child begging to go to school instead of finding ways to avoid it? Maybe she learned that from her brother, too; he refused to miss a day unless he had the flu or worse.

         Look up determination in the dictionary; a picture of Jaimie should be there. One night I made the call to her brother to let him know she learned to tie her shoes. It only took twenty-one years! Until that time, we had opted for the easy clasp Velcro shoes. We told the doctor we would expect everything until Jaimie gave up. We’re still waiting for her to say it thirty years later.

         We cooked together until recently. She’s on a diet program and most foods are microwaved. I started her out chasing eggs around a bowl at the age of two and we worked up to a luscious breakfast of French toast, bacon, fruit, and coffee. Of all the things we’ve given her, the greatest is the freedom to try things. We talk to her as we would any other adult. Quite often she surprises us with her knowledge.

         Once she asked how a radio worked. I stumbled around for an explanation she might understand, talking about how sound starts at a tall tower and travels through the air to our radios. Sighing with boredom, she said like television? I agreed it was like a television and visited the library the next day to read up on electronics!

         I don’t need calendars or TV guides; she’s my walking version of both. Her memory is amazing. Because of her low thyroid, she is on the Jenny Craig weight loss program. Never have I seen such dedication! She has lost sixty-five pounds so far. Very occasionally, she will eat something off diet, but sets me straight if I offer an unscheduled treat.

         She is a loving, sweet person, but for those who consider these her only personality traits, I warn that the lady has a temper. One difference is, she’s learned to control it. We’re taking lessons from her. We’ve learned patience and kindness. We now see people through her unbiased eyes.

         Her favorite place is a beauty salon. I took her for haircut, shampoo, blow-dry and to have her nails done when she turned twenty-one. Bad move. Her preference would be once a week if I didn’t hold the checkbook reins. Speaking of her money, she does not loan it without expecting repayment by the next day. Nor does she see spending her money if she can get me to pay instead.

         Over the years, we’ve discovered our ‘damaged’ child is far from it. She has an amazing capacity to love, forgive, see people for who and what they are without relying on color, race, religion or sex. The only bias I’ve seen is her undying admiration for Dwayne ‘The Rock’ Johnson of wrestling/movie fame and Tiger Woods on the golfing circuit and the presidential candidate who shall not be named. She’s dedicated to watching all political debates and adamantly keeps her voting status current. This year we disagree on the candidate of choice, but she has no intention of changing her mind; nor do I. Perhaps all of us would be better people if we were as 'damaged' as she.

         Things I thought we would never experience with our special child have become common place. She had a handsome young man ask her to the prom. He was properly stunned when she met him at the door. Her sister-in-law insisted Jaimie be a bridesmaid at her wedding. Everything went beautifully, if you overlook her leaning against a decorative column because her feet hurt in her first pair of high heels. Her current boyfriend of one year asked her to visit a haunted house last year. Thrilled, she accepted, and then refused to go through parts of the horror mansion. That worked out well since he wasn’t too keen on it either. Yet they have a date to go again this year with a movie afterward.

         Those fortunate enough to meet Jaimie love her. She’s one of the few people I’ve seen hairdressers and manicurists go out of their way to give birthday parties. When she went to the prom, she received the full beauty treatment from head to toe as a gift from her beauty salon. If I go to the store without her, explanations are in order. From store manager to cashier, everyone knows her. When she visits the diet center, every employee and most of the customers know her and love to see her walk in because she is always smiling. She encourages beginners and hugs old friends.

         She has brought so much to so many and none of it can be bought. She hands out laughter, good will and loving kindness with an open heart. With her and other Down’s children, all they want in return is the same. If you might be thinking of adopting or being a foster parent to fill that empty place in your heart, why not fill it to one of these remarkable children. Go on – get ready, get set, LOVE!