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The Smell of Rain | The Special Mother | Welcome to Holland | The Preemie Purple Heart |
You Are My Sunshine | The Butterfly | A Higher Power | A Little Guy Makes a Big Hit |
The Smell of Rain Author Unknown A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. Still groggy from surgery, her husband David held her hand as they braced themselves for the latest news. The afternoon of March 10, 1991, complications had forced Diana, only 24 weeks pregnant, to undergo an emergency cesarean to deliver the couple's new daughter, Danae Lu Blessing. At 12 inches long and weighing only one pound and nine ounces, they already knew she was perilously premature. Still, the doctors soft words dropped like bombs. "I don't think she's going to make it," he said, as kindly as he could. "There's only a 10 percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one." Numb with disbelief, David and Diana listened as the doctor described the devastating problems Danae would likely face if she survived. She would never walk. She would never talk. She would probably be blind. She would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation. And on and on. "No...No!" was all Diana could say. She and David, with their 5 year old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away. Through the dark hours of morning as Danae held onto life by the thinnest thread, Diana slipped in and out of drugged sleep, growing more and more determined that their tiny daughter would live and live to be a healthy, happy young girl. But David, fully awake and listening to the additional dire details of their daughter's chances of ever leaving the hospital alive, much less healthy, knew he must confront his wife with the inevitable. David walked in and said "We need to talk about making funeral arrangements," Diana remembers. "I felt so bad for him because he was doing every thing, trying to include me in what was going on, but I just wouldn't listen. I couldn't listen. I said "No that is not going to happen, no way! I don't care what the doctors say. Danae is not going to die. One day she will be just fine, and she will be coming home with us!" As if willed to live by Diana's determination, Danae clung to life hour after hour, with the help of every medical machine and marvel her miniature body could endure. But as those first days passed, a new agony set in for David and Diana. Because Danae's underdeveloped nervous system was essentially "raw", the lightest kiss or caress only intensified her discomfort - so they couldn't even cradle their tiny baby against their chests to offer the strength of their love. All they could do, as Danae struggled alone beneath the ultra-violet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl. There was never a moment when Danae suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Danae turned two months old, her parents were able to hold her in their arms for the very first time. And two months later - though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero - Danae went home from the hospital, just as her mother had predicted. Today, seven years later, Danae is a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She shows no signs, whatsoever, of any mental or physical impairments. Simply, she is everything a little girl can be and more - but that happy ending is far from the end of her story. One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Danae was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Danae was chattering non-stop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, Danae asked, "Do you smell that"? Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Danae closed her eyes and again asked, "Do you smell that"? Once again her mother replied, "Yes, I think we're about to get wet. It smells like rain." Still caught in the moment, Danae shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest." Tears blurred Diana's eyes as Danae then happily hopped down to play with the other children before the rains came. Her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months her life when her nerves were too sensitive for them to touch her, God was holding Danae on His chest - and it is His loving scent that she remembers so well. ![]() ![]() |
The Special Mother By Erma Bombeck Did you ever wonder how mothers of premature children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew." Finally He passes a name to an angel and smiles, "Give her a premature child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a premature child to a mother who does not know laughter? That would be cruel." But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of everyday of her life, because she is doing My work as surely as if she is here by My side." "And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice." ![]() |
Welcome to Holland By Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability— to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this... When you are going to have a baby, it's like planning a fabulous vacation trip— to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David". The gondolas in Venice. You may learn some phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland." "Holland?!" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you my never be free to enjoy the very special, the very lovely things about Holland. ![]() |
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Preemie Purple Heart by Renea Erickson One day a child was born, too early, too small, but loved as much as any child could be. As the parents of this child entered this journey, they found themselves feeling alone. They had the joys of being new parents but the fear of losing their child, the thrill of giving birth, the grief of a lost dream. This was supposed to be a joyous time, not a time filled with grief, anger and pain. Little did these parents know they were not alone. The Preemie Purple Heart is an outward sign of unity among a special group of people. A group that knows no country, language, economic, ethnic or religious bounds. A group with one common goal: hope for the future of premature children. This group includes not only parents but grandparents, aunts, uncles, nurses, doctors, clergy and former preemies. This group shares a bond beyond words, a bond only the heart knows. The Preemie Purple Heart is born of an idea borrowed from the US army, a medal given for being wounded in battle. What bigger battle is there than the battle for life and the wounds of premature birth live on with the infant and family forever, fading with time. The color was once reserved for royalty, making it special and it is gender neutral. The heart is not a solid color and the stripes in each heart are a little different, just as every child and every journey is a little different, but the basic design is the same, just like the basic experience is the same. The heart is made of glass, it is strong but not so strong it could withstand a crushing blow. The premature child is strong but not invincible. It is a heart because the heart is our center, its every beat renews life and hope, it symbolizes love. At the bottom of the Preemie Purple Heart is a teardrop, it is symbolic of the tears shed during the journey of a premature family, good and bad, joy and sorrow. The Heart can be with you when you feel alone, remind you there are hundreds of others who keep you in their hearts, remind you there are others who need to be in your heart. It can give you a chance to share your story, when someone asks about the heart you wear you can tell them about the heart that beats inside you. ![]() |
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A Little Guy Makes a Big Hit By Chris Bourgeois Jake and Taylor-24.5 weekers born May '93 I would like to share a little story with you, one that I can't get it out of my mind. On Monday, Jake and Taylor had a baseball game. Their team is made up of 7 and 8 year olds, so they are the younger part of the team. That still doesn't change the fact that they look more like 5-year-olds than 7. Taylor is just on the team for the t-shirt and reward at the end of the season. Jake, on the other hand, has been working on fielding, throwing, hitting, running and, yes, stealing home for months. He has been watching the pros and at one point, attempted a bunt at one of his at-bats (much to the amazement and, I think, amusement of his coaches). The other day, when Jake went up to bat, one of the parents from the other team remarked, "Wow. Is he little!" That made my proud, over-protective Mommy ears perk up. I was ready to pounce on the man (he was big, too!) if he dared to say anything bad about my boy. We then proceeded to watch as Jake slugged the tar out of the ball and made it safely to base. Now, making it to the base is key, because Jake is NOT the fastest child (my husband says he gets that from him), but in little league, if you hit the ball you have a great chance of making it to the base because few kids can actually throw the ball to the base and even fewer can catch it. Jake went on to score for his team - he never even thought about slowing down at 3rd - he just kept on going until he touched home base. The next time Jake was up at bat, that same dad said to the person next to him, "Look at this kid. He's a ball of fire. And he can hit." Well, I almost cried. Jake will never know that he taught a grown up something that night. A stranger looked at Jake - small and wearing plastic braces on his legs - and made a snap judgement. Almost as fast, his opinion was changed. I am sure that I am making a big deal out of nothing, but I would like to believe that maybe this man will think twice before judging someone by appearance. I am constantly reminded what is really important in life (which is - did you make it to home?). There are days when these lessons are pushed from my mind because of everyday life "things" that are given more importance than they deserve. But, I would like to think that when it really matters, the lessons I have learned (and am still learning) will be with me when I need them. And, hey, if I can pass it on to some dear friends - even better!! Note: Jake and Taylor were born at 24.5 weeks in May of 1993 weighing in at 2 lbs. (920 grams) and 2 lbs. 1/2 oz (922 grams), respectively. Taylor's road was a steady one. Few steps backward and home with no aids after 101 days in the hospital. Jake came home at the same, but his road was bumpier. He battled NEC, a double hernia and a talent for yanking his tube out, so he had to be re-intubated almost daily (sometimes more). He came home on oxygen and a monitor and shocked everyone when he got rid of both after less than 2 months. At 18 months, Jake had strabismus surgery and wears glasses as does his twin sister. Now he wears plastic leg braces because the peritoneal nerves in his right leg never developed. Used with permission from Chris Bourgeois |
You Are My Sunshine Author Unknown Like any good mother, when Karen found out that another baby was on the way, she did what she could to help her 3-year-old son, Michael, prepare for a new sibling. They found out that the new baby was going to be a girl, and day after day, night after night, Michael sang to his sister in Mommy's tummy. He was building a bond of love with his little sister before he even met her. The pregnancy progressed normally for Karen, an active member of the Panther Creek United Methodist Church in Morristown, Tennessee. In time, the labor pains came. Soon it was every five minutes, every three...every minute. But serious complications arose during delivery and Karen found herself in hours of labor. Would a C-section be required? Finally, after a long struggle, Michael's little sister was born. But she was in very serious condition. With a siren howling in the night, the ambulance rushed the infant to the neonatal intensive care unit at St. Mary's Hospital, Knoxville, Tennessee. The days inched by. The little girl got worse. The pediatrician had to tell the parents, "There is very little hope. Be prepared for the worst." Karen and her husband contacted a local cemetery about a burial plot. They had fixed up a special room in their house for their new baby, but now they found themselves having to plan for a funeral. Michael, however, kept begging his parents to let him see his sister. "I want to sing to her," he kept saying. Week two in intensive care looked as if a funeral would come before the week was over. Michael kept nagging about singing to his sister, but kids are never allowed in Intensive Care. Karen made up her mind, though. She would take Michael whether they liked it or not! If he didn't see his sister right then, he may never see her alive. She dressed him in an oversized scrub suit and marched him into ICU. He looked like a walking laundry basket. But the head nurse recognized him as a child and bellowed, "Get that kid out of here now! No children are allowed." The mother rose up strong in Karen, and the usually mild-mannered lady glared steel-eyed right into the head nurse's face, her lips a firm line. "He is not leaving until he sings to his sister!" Karen towed Michael to his sister's bedside. He gazed at the tiny infant losing the battle to live. After a moment, he began to sing. In the pure-hearted voice of a 3-year-old, Michael sang:
"You are my sunshine, Instantly the baby girl seemed to respond. The pulse rate began to calm down and become steady. "Keep on singing, Michael," encouraged Karen with tears in her eyes.
"You never know dear, As Michael sang to his sister, the baby's ragged, strained breathing became as smooth as a kitten's purr. "Keep on singing, sweetheart!!!"
"The other night dear, Michael's little sister began to relax as rest, healing rest, seemed to sweep over her. "Keep on singing, Michael." Tears had now conquered the face of the bossy head nurse. Karen glowed.
"You are my sunshine,
The next, day...the very next day...the little girl was well enough to go home!
Woman's Day Magazine called it "The Miracle of a Brother's Song." The medical staff just called it a miracle. Karen called it a miracle of God's love!
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The Butterfly Author Unknown A man found a cocoon for a butterfly. One day a small opening appeared, he sat and watched the butterfly for several hours as it struggled to force its body through the little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and could go no farther. Then the man decided to help the butterfly. He took a pair of scissors and snipped the remaining bit of the cocoon. The butterfly then emerged easily. Something was strange. The butterfly had a swollen body and shriveled wings. The man continued to watch the butterfly because he expected at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and deformed wings. It was never able to fly. What the man in his kindness and haste did not understand, was that the restricting cocoon and the struggle required for the butterfly to get through the smallopening of the cocoon are God`s way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Sometimes struggles are exactly what we need in our life. If God allowed us to go through all our life without any obstacles, that would cripple us. We would not be as strong as what we could have been. Not only that, we could never fly. |
A Higher Power Author Unknown When I found out that I was pregnant, nothing could have made me happier. My husband and I had many joys, among them feeling the baby kick and prod. Lamaze was also fun, but in a nontraditional kind of way. However, I thought that I could totally breeze through this "birthing" stuff. Yeah, right. At 35 weeks, I broke out in the most horrible rash. It was unbearable, and I didn't sleep for 15 nights, for more than an hour. The doctors tried everything to relieve it, but induction was inevitable. So, at 37 weeks, I was going to "breeze" through the induction. Yeah, right. After almost 3 days of labor, and nothing more than crackers and Sprite, the doctor decided that if my water didn't break, or the contractions still were unstable by 8 pm that night, they would take me off the Pitocin, and do a C-Section the next morning. Well, at 7:59 that night, the contractions were getting stronger, and I was sure that I was going to die. I also had a whole room full of well-wishers, but not for long. I asked my husband to help me, I needed to go to the bathroom, so off I went IV's and all. About that time, I hear this enormous pop and my water broke soon after that. "Here we go," I thought. "I guess that means I don't get my supper, huh?" Well the longing for food was soon replaced by the longing for drugs. After 6 hours of pushing, and still no baby, they decided to take her out via episiotomy and vacuum. She finally made her way into the world. I named her Ashley. Ashley was the cutest, loudest little thing that I had ever seen or heard, and she was mine. Little did I know that tragedy awaited and I would feel a pain worse than I thought was possible. While I was helplessly watching, Ashley was about to fight the battle of her life. On the second day of life, my baby quit trying to breast feed. She also lay dormant, not moving. Even the act of changing her diaper didn't upset her and she couldn't maintain her body temperature. My gut was about to explode. Something was wrong, something bad. I immediately called in the nurses, who called in the neonatologist. They assured me that we had just miscalculated Ashley's due date, and she was a little preemie. I knew better. I felt it. Something was much worse than that. Unfortunately, I was right. The next day, I was released from the hospital, but Ashley stayed due to a sudden onset of jaundice. My husband and I left just long enough to check on the house and get a stuffed animal for Ashley. When we arrived back to the hospital, we passed a baby being rushed to NICU. This baby was hooked up to so many tubes, you could hardly see it. I found out five minutes later that it was not just a baby, it was my baby. My heart sank, I cried uncontrollably. After an hour or so, they let me see her. They told me that every test they had ran was normal, but that she had several severe seizures and was in a coma. They told us that their was nothing more that we could do, to go home and get some rest. They would call if anything came up. We had been home for almost 4 hours when they called. "Mrs. Cody, get over here, now. We ran her blood-ammonia, it should be no more than 34, it's 1800! We are transporting her immediately to a specialist in Nashville. She is clinically dead, but we're going to send her on. You might want to hold her for the last time. While I frantically got my husband, I got so mad at God. All I could scream is, "WHY? IT'S NOT FAIR! HOW COULD YOU DO THIS TO ME?" We arrived at the Nashville hospital about an hour after Ashley. She was sick, and fought hard for three days, but she would live. She was diagnosed with a Urea Cycle Disorder. A rare metabolic disorder that takes place in the liver. She was in the hospital for weeks, but is now a healthy and happy 10 month old child. She will always have this disorder, but with the right doctors, diet and medications, and frequent hospital stays, she will be okay. For a woman that always had to plan, this was not easy for me. I am not the kind to put things in the hands of a higher power. But now I do. I do everyday. You have got to learn to trust in someone other than yourself, and when I feel down, or have a bad day, I think of the struggle and the grueling tests and treatments my daughter has gone through, and goes through on a regular basis. We don't have as much control in life as we would like to think. Always give credit to "someone other than yourself." Never take your health or people you love for granted. They may not always be here. We don't always know why bad things happen to good people, but they do. We all have a lesson to learn, we just have to slow down and be willing to be taught. We have a purpose. Each one of us, even if we don't know it yet. There is one thing that I know. Miracles do happen, and they happen everyday, and I am a better person for having experienced it. Through the headache and tears, we have been blessed. |
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