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Baby girl.

Our story starts out like the Great American Dream. Man fails in love with Woman. Woman fails in love with Man. They get married and buy a home. A short time later, their firstborn -- a son -- comes along, whole and happy. Life is tough but it is good. A little while later, a second child is on the way. This pregnancy is different, very difficult.

But no need for alarm. Complications with the pregnancy occur and the baby is born 15 days early. Still no cause for alarm. The little girl weighs in at six pounds, three ounces and measures 18 1/2 inches. Apgars are fine. On the third day, the family goes home believing again that all is fine in their world. And life goes on.

For the next six weeks they believe that all is well until the pediatrician becomes concerned with the baby girl's lack of development. Still there is no great panic. The doctor says to give the baby girl some time to catch up, since she was a bit premature. So again there is no panic, just caution. By the eighth week, concerns are very real and the doctor would feel better if mom and dad took baby to see a neurologist in the Big City. He would know what to do.

So to the Big City they go. They see the neurologist. He talks very openly and decides to order many tests -- some today, some in a couple of weeks. But he does suspect a problem. The test results are finally known. The baby girl is not perfect. Her brain has stopped growing. He calls it a big word but the parents don't hear anything but the sound of their own hearts falling to the bottom of their chests. How? Why? Those words are all that can be heard over the tears. The advice from the neurologist is to get enrolled in an early stimulation program and to come back for check-ups. So the mother follows the neurologist's advice and calls the nearest rehabilitation hospital.

The baby girl was born in late March. Time passes while paper work and phone calls fill the family's life and now it is August. They go to their first therapy visit. The family could never have guessed the amount of time and effort it takes to care for their baby girl. But love has a way of making the job a little bit easier. And life goes on.

It's now December of the first year and baby girl is sick with a bad cold. Christmas is at the end of the week and the weather is cold but they have to keep their appointment with the neurologist. He comes into the room, does his evaluation, hands the baby girl back to her mother and makes his announcement. "I see no significant changes in her development and I think considering your age ... you have one healthy child and may have more. Considering the financial costs involved, you should put the baby girl's name on a waiting list for a residential home."

The statement is cold. The mother can tell it has been said many times before by this man. It is almost Christmas -- the time of hope and miracles. How could he tell her this now? The baby is sick; of course she won't do well with the tests. All of this goes through the mother's mind in a split second. But instead of falling apart and walking away, the mother strikes back.

"How can you tell me this? She's not a puppy dog I can't housebreak. I won't just drop her by the wayside because it would be easier. My husband and I chose to have her as we chose to have our son. That meant whatever God gave us -- good or bad."

As the mother says this, she has many tears falling down her face. She hurts. And the hurt from those words --and the words themselves -- will for all time be in the mother's mind. Never will she forget the anger of those words. This child was her daughter, her flesh and blood. She would be the one to take care of the baby girl. For no institution, no matter how wonderful, can ever take the place of a mother's love.

The story does not end here. The baby girl is now two and a half years old and is just what the neurologist said she would be. But she makes progress with her therapy. She has a very special bond with her older brother. The pediatrician from the beginning of the story takes very good care of her as well as the family. He has been there for the family in times of doubt and in times of joy. He watches her change ever so slightly, but the changes are there. He has given his home phone number to the mother and been there in the wee hours of the morning when the fears and the tears of the night are the worst.

In the beginning, he held the family's hand as they made the decision to keep the baby girl at home. And after the baby girl's first birthday, he confided to the mother that only through her love was the baby girl able to live. He had had dark thoughts that this day would never come. He was glad to be wrong. He has often said prayers for the baby girl. And the mother and father know that without his support in the beginning, this story would not be told. He gave them the ability to move on with their lives and to grow with the baby girl in ways their son could never have given them.

Recently the baby girl reached a new milestone. No, she's not sitting or rolling. It's as simple as a laugh. It took 31 months but it never would have been witnessed by mother and father if Dr. Depressing had had his way.

So I say to all the Dr. Depressings of this world--come forward into the 20th century. If you cannot see the small miracles in life, how will you ever be able to appreciate the large ones? And to the pediatrician -- I hope someday all doctors can look at the example you have set and make it a personal goal. Your true reward will not be the little gifts the baby girl gives you at Christmas but in the place we both know is waiting for us all someday.

I tell this story today without names because the story is what is important, not the people. And there are many other people in this story we have met -- most of whom have helped us along the way. Some do fall in with Dr. Depressing, but mostly, people have supported us. And, of course, the story continues.

Life is still difficult, but it is good!

Geraldine G. Miller is a full-time mother and wife who calls herself her "children's best advocate." She lives in Sewickley, Penn., with her husband, Kirk, and children, Justin, 5, and Rebekka, 3. Rebekka has multiple disabilities, including microcephaly, cortical blindness, hearing loss in one ear, facial asymmetry and spastic quadriplegia. Miller says that "no matter what the developmental scale says about Rebekka's abilities or disabilities, she is a person all unto herself, with a personality bursting out with love."
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Author:Miller, Geraldine G.
Publication:The Exceptional Parent
Date:Mar 1, 1993
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