Baby Milagros

Fox News is reporting on the story of a 13-month old girl from Peru who was born with Sirenomelia (a.k.a. Mermaid Syndrome). She is undergoing the first of several operations to seperate her legs, which were seamlessly fused from the ankles to the upper thighs when she was born. The doctors are optimistic that the operation will be successful. The first surgery, a team of eleven doctors will seperate her legs from the ankles up to the knees. Sirnomelia is fairly rare - inflicting one in every 70,000 births. Milagros (which is Spanish for "Miracle") is one of three children alive in the world with Sirnomelia. Please keep Milagros and her family and her doctors in your prayers.

Carolyn

On Thursday, Oprah had a woman on her show named Carolyn. The media has dubbed her "The Woman Without a Face" but having similar things said about me, I choose to call her by her name, Carolyn.

Carolyn was shot at point-blank range in the face by an enraged boyfriend a year and a half ago. Her story will air on the Discovery Health Channel on a program entitled, "Plastic Surgery: Before and After." For more program information, check out their website at: www.discovery.com/health.

For more information on Carolyn and her dramatic and inspiring ordeal, go to Oprah's website: http://www2.oprah.com/tows/pastshows/200505/tows_past_20050526.jhtml

To view a slideshow click here: http://www2.oprah.com/tows/slide/200505/20050526/slide_20050526_101.jhtml

Attention Scrapbookers!

I stumbled across an advertisement in a scrapbooking magazine this weekend for stickers and scrapbooking products specifically tailored towards diversity: namely, the elderly, various ages and races, and those with disabilities.

I just checked out their website: www.same-differences.com. Same-Differences is a company started in 2004 by Kim Lundy. To read more about her, see the products, and to see where to purchase and how to order items, visit the website.

Here is a bit of information from the "About Us" section of their website:

All our products are printed on 100% acid and lignin free cardstock and/or sticker paper. The images can be used in scrapbooks, backed with magnetic tape for magnets, or laminated for educational use.

The inspiration for Same Differences grew from realizing that the scrapbooking industry is lacking "diversity" products - populations such as the disabled, the elderly, and those who have different ethnicities, religions, and cultures. Scrapbooking is growing exponentially and products are becoming more accessible to people other than those who look for and visit their local scrapbooking store, if they even have scrapbooking stores in their area. Although the "big chain" craft stores certainly are catching up in offering scrapbooking products, it is impossible for them to offer such customized products.

Our product line shows characters with different "diversities" conducting typical life activities in a positive fashion. We treat the diversity issue as "no big deal", just a part of life. We hope that this company will meet the needs of these populations in a creative way.
Additionally, we hope that our products are used in educational settings in order to promote positive awareness of differences between people in a positive manner.

Mom's Story, Part Six

Click here to read Part One
Click here to read Part Two
Click here to read Part Three
Click here to read Part Four
Click here to read Part Five

Part Six:

We settled into life as normally as possible, despite regular visits to Children’s Hospital. After many consults, Vicki’s first reconstructive surgery was scheduled when she was two and a half years old. Though we had confidence in our physician’s skill and training, we knew this particular surgical procedure had not been done many times before. We were warned of possible outcomes, including death.

If it had been merely a matter of trying to make Vicki look prettier, we would have hesitated. But this surgery was critical for her future health and well-being. Because her eyes were so widely spaced, she had difficulty focusing. She had no eyelashes, which left her eyes vulnerable to dust and debris. Her malformed nose obstructed her breathing to the point where she could only breathe through her mouth. She had a partial cleft palate, with bones missing in her upper mouth. Her teeth would not grow in properly, she would have difficulty eating, and future problems with her jaw were inevitable. We knew we had no other choice but to agree to the surgery.

The long drive from the suburb in which we lived to the hospital in downtown Philadelphia seemed unusually interminable the morning of Vicki’s surgery. Hers was the first operation scheduled for the day, so we had to be there extremely early. The sun had not yet risen as we sped along the Schuylkill Highway, with Vicki asleep in the back seat. My husband and I were silent, each drowning in our own thoughts. I longed to turn around and go back home. I couldn’t help thinking, what if, at the end of this day, as we drove back along this same highway, it would be with broken hearts because our daughter had not survived?

Once at the hospital, a myriad of papers had to be filled out and signed. Vicki played quietly, oblivious to the pain and fear that awaited her. After a long wait, we were escorted to another area, where we again waited. I attempted to keep Vicki occupied, but I felt like exploding.

An orderly arrived, grinning at Vicki as though he were about to transport her to Disneyland. She innocently placed her tiny hand in his gigantic palm, and together they left the room. I wondered if I would ever see her alive again.

That day was astoundingly long and emotion-laden. We sat in the surgical waiting room, along with other parents, anxiously waiting for word about our child. Nervous conversation helped pass the time as strangers shared the gravest fears of their hearts with one another. Each time a doctor appeared in the doorway, conversation halted. With bated breath, we all waited to hear whose name would be called. We quickly discovered that when a doctor marched into the waiting room and spoke with the parents there, it meant the operation had been successful. But if the doctor paused at the entrance of the waiting room and called the parents out into the hall, it meant bad new.

Many operations that day were of short duration, so parents came and left the waiting area fairly quickly. We spent most of the day talking with a young couple whose little girl was undergoing open-heart surgery. Hospital waiting rooms are sometimes similar to battlefields, in that fear is in the air. Deeply personal issues are freely shared, and friendships fuse quickly. After spending nine or ten hours bonding with this couple, we felt their dread as the doctor appeared in the doorway and called them out to the hall. We briefly hugged and cried together before they left the room. They did not return. Their daughter had died.

The Good, Insane Concordance Maker

Here is the latest online article written by John Piper. The article has been taken from http://www.desiringgod.org/.

May 11, 2005

There’s a catch to this story that comes later. I hope you read to the end. I think you’ll be encouraged. I was. I read in a recent issue of Books and Culture a review (by Timothy Larsen) of a new biography of Alexander Cruden, the man who single-handedly wrote one of the early concordances to the King James Bible (Alexander the Corrector: The Tormented Genius Who Unwrote the Bible by Julia Keay). That means he recorded every one of the 777,746 words in the Bible and made a note of every place where it occurs. For example, the word “him” (6,667 occurrences), “her” (1,994 occurrences), “God” (4,444 occurrences), etc.

In the mid-1720s, Alexander Cruden took on a self-imposed task of Herculean proportions, Himalayan tedium, and inhuman meticulousness: he decided to compile the most thorough concordance of the King James Version of the Bible to date. The first edition of Cruden's Concordance was published in 1737. How could he have possibly completed such a project? Every similar undertaking before or since has been the work of a vast team of people—in recent times made incomparably easier by computers. Cruden worked alone in his lodgings, writing the whole thing out by hand. The KJV has 777,746 words, all of which needed to be put in their proper place. Cruden even wrote explanatory entries on many of the words—in effect, including a Bible dictionary as a bonus. The word “Synagogue,” for example, prompted a 4,000-word essay.

Furthermore, Cruden’s day job was as a “Corrector of the Press” (proofreader). He would give hawk-eyed attention to prose all day long. Then he would come home at night, not to rest his eyes and enjoy some relaxation, but rather to read the Bible—stopping at every single word to secure the right sheet from the tens of thousands of pieces of paper all around him and to record accurately the reference in its appropriate place. He had no patron, no publisher, no financial backers: his only commission was a divine one.

Cruden’s Concordance has never been out of print. Some hundred editions have been published, many of which have been reprinted untold times; shoppers at a popular online bookstore today can choose from 18 different in-print versions of Cruden’s.

For this, thousands of lovers of the Bible thank God. They have studied the Bible seriously for almost three hundred years with Cruden’s help. If this is all we knew, we would simply be amazed at his industry and give thanks. But here’s the catch. He was, if not insane, utterly maladjusted.

Cruden was institutionalized for madness four times in his life. His behavior was often bizarre.

On another occasion, Cruden had apparently gone to break up a brawl but ended up spending the best part of an hour admonishing disorderly soldiers not to swear while periodically whacking them on the head with a shovel. He also would propose to women with whom he had established no romantic bond (one such intended he had not even met). Being unable to take no for an answer, he would then turn himself into a persistent nuisance, if not a stalker.

Eventually he decided that God’s call on his life was to reform the morals of Britain. “He therefore started a one-man campaign to have the King name him to a position hitherto unknown in British government, ‘Corrector of the People.’ He then went rambling about the country admonishing strangers to observe the Sabbath.”

He simply could not discern what was fitting and probable. This meant he did foolish things. But not all foolish things are bad. “He did not know—as all normal people do—that when a man gets propositioned he can feel sad for the plight of the prostitute, but there is really nothing he can do to help. Cruden instead hired her to do legitimate work, and she lived a respectable and grateful life thereafter.”

On another occasion “Cruden did not know that a prisoner’s case was never reconsidered when he was only a few days away from execution. He went at this campaign in his usual obsessive and forthright way and pulled off a political miracle—the man’s sentence was reduced to deportation.”

What encourages me about this is to realize that God’s ways are strange. “How unsearchable are his judgments and how inscrutable his ways!” (Romans 11:33). And in this strangeness, sinful and sick and broken people fit into God’s designs. He has purposes for the mentally ill and for the emotionally unstable and for the socially maladjusted. And he has purposes for you.

As Timothy Larsen observes, Cruden did not have the sense to know that “one man working alone in his bedroom could not produce a complete concordance of the Bible.” And from this folly millions have been blessed. Beware of belittling God’s crooked sticks. With them he may write the message that that makes a thousand people glad.

Looking for merciful design everywhere,

Pastor John

Mom's Story, Part Five

Click here to read Part One
Click here to read Part Two
Click here to read Part Three
Click here to read Part Four

PART FIVE:

I held Vicki in my arms and asked myself the question, “If this tiny life that God has entrusted into my care is not beautiful and cherished by me, her own mother, what hope is there for her?”

My tears fell on her head as I realized my lack of love for my own little girl. I began to sob as I confessed my shame to God. Then I asked Him for help. I could no longer do this on my own.

As I prayed, I held Vicki close, soaking her pink jammies with my tears. Then, like the sudden appearance of the sun on a cloud-shrouded day, she stopped crying. She seemed to be at peace, at last. And so was I.

One evening not long after that, my husband and I left the children with a babysitter and droe to our church. There we found a tiny room in the basement where we could be alone. We shut the door, left the lights off, and prayed together. We were desperate. We needed the Lord’s leading, and so we poured out our complaints before Him and pleaded for His help.

I am not a person who sees visions; but as we prayed in the darkness of that tiny room in the basement of the church, I saw in my mind the image of a huge hand. Though I could see nothing more than the hand, I knew it was the hand of God. And there, nestled in the palm of that hand, stood my husband and me. We were surrounded by darkness, but there was complete peace and safety there in the palm of His hand. Then, in my mind, a tiny light appeared, far away as though at the end of a long tunnel. My thought was that God was telling me that the journey ahead, the journey into disabilities, would be dark and often scary, but we would go through it in the palm of His hand. We had no need to fear, for He would take us through whatever lay ahead.

I shared what I had seen in my mind with my husband, and we were both encouraged. We went home and slept well that night.

Not long after that, a man my husband had once worked with called. He was now a sales manager for another company, and he offered my husband a job. We were ecstatic. It appeared to be a great opportunity, with a medical supply company that not only offered a good salary, but excellent medical benefits as well. But there was a catch. We would have to move across the country to Philadelphia.

We prayed about it, not wanting to do anything outside the will of the Lord for our lives. We remembered the image of God holding us in the palm of His hand and knew that He would take care of us. After much prayer, we accepted the position and moved to Philadelphia.

After settling into our new home in a suburban area, we contacted Children’s Hospital of Philadelphia and set up an appointment for Vicki to be seen. Our appointment lasted an entire day, as we were shuffled from one specialist to another. The day was draining and tiring for all of us, but we were relieved to at last be told what Vicki’s condition was. She was diagnosed with Hypertelorism with a median facial cleft. This is a rare condition where the two halves of the face do not properly fuse together, resulting in abnormal distance between the eyes, as well as other anomalies. Not only did one of the specialists know what the condition was, but he had been specifically trained to treat it by a French physician who had pioneered the necessary reconstructive surgery. Children’s Hospital of Philadelphia was only one of three facilities in the U.S. where surgeries were being performed to correct such a condition.

Now, not only were we in the exact location where Vicki could be treated, but my husband was employed by a medical company who agreed to pay for all further surgeries and expenses. We marveled how the Lord had moved us to exactly the right place where Vicki could be helped.

Though in many ways, we still felt as though we were in the long dark tunnel that I had seen in my mind many months before, we now began to see the tiny light ahead. But what did the journey toward that light yet hold?

Mom's Story - Part Four

Click here to read Part One
Click here to read Part Two
Click here to read Part Three

Part Four:

Months passed, and our family limped along the best we could. Medical bills mounted, and my husband still had no job. Friends and relatives urged us to file for bankruptcy. It seemed we had no other choice, yet the thought repelled us. We kept putting it off.

Questions plagued me. Why was this happening to us? Was this a punishment for bad things we had done? Or was this simply an unfortunate accident of nature? As followers of the Lord Jesus Christ, my husband and I believe that God is in control of all things. So then, was this a mistake that God allowed, or was it possible that He had actually planned it?

These questions drove me to the Bible. Heavy on my heart was the need to know if my husband or I had “caused” Vicki’s disabilities because of things we had done or not done. I found my answer in John 9:1: “As He [Jesus] went along, He saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Nether this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life.’”

When I read that verse, it was like a refreshing shower on parched ground. This wasn’t a punishment! And more than that, this verse suggested that God could display Himself through little Vicki’s life. This sobering thought led me to my next question.

Was this a mistake, an unfortunate accident of nature that God simply allowed, or had He actually planned for Vicki to be born with disabilities? Again, I searched the Bible for answers, and again I was not disappointed. Psalm 139:13-16 declares, “For You created my inmost being; You knit me together in my mother’s womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well. My frame was not hidden from You when I was made in the secret place. When I was woven together in the depths of the earth, Your eyes saw my unformed body. All the days ordained for me were written in Your book before one of them came to be.”

These verses told me that Vicki’s condition was no accident. It was planned by God. It was God who knit her together in my womb, and His “works are wonderful,” even when they don’t appear so wonderful in our eyes.

But still the question nagged, “Why ME?” Why did this happen to MY baby? Again, the Bible gave me the answer in 2 Corinthians 4:17-18: “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.”

Wow. Suddenly I saw that Vicki’s disabilities were perhaps not the tragedy I had first thought. In fact, according to these verses, our family’s problems could actually aid us in achieving “an eternal glory!” That knowledge exploded with an entirely new vista of what God was doing in our family. It also dramatically altered my attitude toward Vicki.

I began to look at her differently. Rather than seeing her misshapen mouth, her barely-recognizable nose, her widely-spaced eyes, I began to see Vicki as a uniquely-created little girl with every potential to become the person that God formed her to be.

With that new revelation, I tenderly lifted her out of her crib. She cried, as she nearly always did. I held her and deliberately focused on each misplaced feature of her face. As I did so, something wonderful occurred. Her physical features began to blur in my eyes, and I felt I was looking instead at what was inside of her, in her heart and in her soul. It was there that I saw beauty and potential. But, like a seedling freshly planted, this potential needed to be nurtured and cultivated and loved.

And who would do this nurturing? If this tiny life in my arms, this life that God had entrusted into my care, was not beautiful and cherished by me, her own mother, what hope could there be for her?

Brain Damaged Man Wakes Up After Ten Years

Fox News is reporting this story today.

ORCHARD PARK, N.Y. — A firefighter brain-damaged in a 1995 roof collapse had an "amazing" weekend, recognizing and speaking with his four sons and other family and friends for the first time in years, a family spokesman said Monday.

"I want to talk to my wife," Donald Herbert said out of the blue Saturday at the skilled nursing facility where he has lived for more than seven years. Staff members put Linda Herbert on the telephone.

It was the first of many conversations he had during a 14-hour stretch, Herbert's uncle, Simon Manka said.

"How long have I been away?" Herbert asked.

***

Dr. Rose Lynn Sherr of New York University Medical Center said when patients recover from brain injuries, they usually do so within two or three years.

"It's almost unheard of after 10 years," she said, "but sometimes things do happen and people suddenly improve and we don't understand why."

Mom's Story, Part Three

Click here for Part One.
Click here for Part Two.

Part Three:

I hurried back to my room. I got out my Bible and looked up 2 Corinthians 4:17-18. Here is what it said: “For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; while we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.”

I read the verses over and over again, amazed by their meaning, so specific to my particular situation. I believe God was telling me that His concern is for what a person is on the inside, in her heart and soul, and not for what a person looks like on the outside. It was as though He were telling me that my baby was beautiful to Him, and she could be beautiful to me as well.

I laid the Bible aside and pulled the bed covers around me. An uncommon peace settled over me, and I fell asleep.

I was released from the hospital a couple days later, but baby Vicki had to stay behind. A team of experts had been called in to examine her and to decide how best to handle her condition. They concluded that the most pressing matter was the need to protect the brain tissue, which was potentially protruding into the mass of flaccid skin on Vicki’s forehead. At ten days of age, she underwent her first major surgery. A mesh screen was inserted behind the skin of her forehead. This would cover the hole through which brain tissue could seep. Meant as a temporary measure to protect the brain, something more permanent would be required later on. For now, it was all the doctors knew to do. It was unknown if her little body would accept or reject the foreign object.

Vicki remained in the Intensive Care Unit for a month. I spent as much time as I could at the hospital, while my husband searched for employment. Just prior to Vicki’s birth, he had lost his job, along with the family’s health insurance. Now, not only would we have to personally pay for the delivery and my own hospital stay, but the cost of major surgery and weeks of intensive care as well. It was a bleak time for us. It was also difficult for our two-year-old son, who couldn’t understand why he was being left with babysitters day after day. And every day when I arrived at the hospital, I feared I would be told that Vicki had not made it through the night.

But day after day, Vicki survived. She grew stronger and stronger, until at last we were able to take her home. But that presented new problems. Having gotten used to the kindness and understanding of the staff at the hospital, I was unprepared for the reactions I would receive from

others. The first time I took Vicki with me to a store, I returned home in tears. I knew that strangers often approach new mothers, asking to see their baby. But when I was so approached, I was met with gasps of horror or silence and even one woman’s angry declaration, “What did you do to that baby!”

I went through each day in a fog, taking care of the children, the house, trying to live as normally as possible. My husband continued his desperate search for a job, while medical bills mounted. Vicki cried day and night, though doctors could find no reason why. The mesh screen in her head showed no signs of rejection, and there was no infection. She ate well and seemed to progress normally. But still she cried.

I cried a lot, too. I was tense, sad, angry and scared. I tried sharing my feelings with my husband, but he had his own problems. It was his responsibility to take care of his family, to provide an income, to pay the bills, to “make everything right.” But nothing was right. We wondered, would anything ever be right again?