Tuesday, June 28, 2005

Joni Camp

I have been home from Joni Camp for four days now and am still struggling to find a way to put the experience into words. It is an experience I would definitely recommend and strongly urge you to check out the Joni and Friends website and start thinking and praying towards volunteering at a camp near you.

It was wonderful, but also a lot of hard work. The days were jam-packed with activity. We were up early and in bed late, and yet, the energy seemed to always be there when I needed it, which I presume to be nothing but the grace of God and the answer to the many prayers people were praying on my behalf.

I spent the week with an adorable six year old girl with OHDO Blepharophimosis Syndrome. I instantly fell in love with this little girl - as well as her mom, dad, grandmother, and brother (who were all at the camp also).

Being put with a six year old carried with it many benefits. First being, that I got to spend time with a wonderful little girl! Secondly, the six year old team had all sorts of fun stuff planned for them. I think I had just as much fun as the kids did. We had puppet shows, games, a moon walk, a carnival, cartoons, train rides, swimming, boat rides, tubing, treats, singing, crafts - you name it. It was a blast! Another blessing to being put with the six year olds is that I had a wonderful team leader who is going to be a life-long friend.

I met many wonderful people there -- fellow volunteers, families of disabled kids, not to mention the kids themselves. It was great being in an atmosphere where everyone was friendly and kind and the rude staring and probing questions were nowhere to be found.

I am only touching on my week. Like I said before, I am still struggling for words to put this whole experience down. I am sure I will blog more as things get processed.

Thank you to everyone who prayed for me while I was gone. God went exceedingly beyond my wildest expectations and I had a wonderful time.

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A Perfect World?

Hat tip to JT for sending me a link to this article in Christianity Today.

The article was written by the mother of a special needs child who is living with her family in France. Down's Syndrome is becoming virtually extinct in France due to advances in ultrasound technology and legalized abortion. In the article, the mother considers a world completely void of disability.

Here are some excerpts:

I tried to imagine a society devoid of people with disabilities. What if any and all babies with special needs were to be eliminated? What would a society look like if everyone were "normal," if we never had to make provisions and exceptions for people who are deaf, blind, mute, or lame?

Could it be that the special-needs, "imperfect" people have that balancing effect on society as a whole? How would love and compassion develop among people who were only surrounded by the lovely and intelligent? My children treasure nothing more than a smile or kiss, sometimes just eye contact, from their little brother. My nephew, who is a year younger than Michael, loves to help at his school with the class of students with special needs—or as he puts it, "the class like Michael." I see my husband kiss our son's often expressionless, crooked little face, and my heart nearly bursts with a love and joy that I can hardly contain.

As I pondered this potential "perfect" society, one verse from the Bible kept coming to my mind: "Do nothing out of selfish ambition or vain conceit" (Phil. 2:3). Parenting a child with special needs makes living out this verse a little easier.

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Friday, June 17, 2005

Til We Have Faces

Looking for something to do between now and December when C. S. Lewis' classic, The Lion, The Witch, and the Wardrobe hits the theatres? How about reading what, in my opinion, is the best C. S. Lewis novel there is, Til We Have Faces.

A friend recently lent me the book and I devoured it in about three sittings. In short, it is the retelling of the myth of Cupid and Psyche. It is a great read for anybody, but in particular, if you have suffered with facial deformities, the book will take on a deeper level.

I was alarmed how Lewis, untouched by facial deformities as far as I know, could so accurately have his finger on the pulse of the heart, mind, and analytical thought of a woman with an ugly face.

The book was suspensful and mysterious and intriguing and masterfully written. It was also terribly convicting. It is not only those of us with deformed faces that will feel the slap of this story's morale, but any of us with perceived imperfections who allow those thoughts to guide their decisions and shape their realities. A thoroughly wonderful read!

Here is a literary review of the book (minor spoilers -- may want to read the book first). The book can be ordered through Amazon and is also available in hard cover and in audio format.


Jeb Bush Probes Schiavo Collapse

CNN is reporting this story.

Tallahassee, Florida (AP) -- Gov. Jeb Bush asked a prosecutor Friday to investigate why Terri Schiavo collapsed 15 years ago, calling into question how long it took her husband to call 911 after he found her.

In a letter faxed to Pinellas-Pasco County State Attorney Bernie McCabe, Bush said Michael Schiavo testified in a 1992 medical malpractice trial that he found his wife collapsed at 5 a.m., and he said in a 2003 television interview that he found her about 4:30 a.m. He called 911 at 5:40 a.m.

"Between 40 and 70 minutes elapsed before the call was made, and I am aware of no explanation for the delay," Bush wrote. "In light of this new information, I urge you to take a fresh look at this case without any preconceptions as to the outcome."


Joni and Friends Family Camp

Tomorrow is the big day. I leave bright and early in the morning for Joni camp. Seven of us are driving there, it will be a ten-hour drive. Lord willing, we will arrive at the camp safe and sound sometime Saturday night. Sunday will involve a church service and an intense day of training for the volunteers (which is what I will be doing at the camp). We also find out on Sunday what family we have been assigned to. The remainder of the week consists of spending time with your family and attending and participating in various activities.

I am eagerly anticipating the trip and am looking forward to meeting the family that I have been paired with. I pray that I can be a blessing to them in some small way and that they in turn will also bless me, as I am sure they will!

Please be in prayer for me as I am away - safe travels, health, freedom from stress (worrying about the work I've left behind!), and that the families that are attending this camp will go home feeling refreshed and renewed.

Pray that the volunteers are given grace and compassion and kindness and eyes to see all the glories of Christ that God specifically designed to only be seen through the lives of those who live with disabilities.

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Wednesday, June 15, 2005

Schiavo Autopsy Results

Fox News has reported:

Terri Schiavo died from dehydration and was not abused before her 1990 collapse, an autopsy report revealed Wednesday.

The autopsy report also showed there was no evidence Schiavo was given harmful drugs or other substances before her death. The severely brain-damaged woman, who was at the heart of a right-to-die battle, died March 31, 13 days after being disconnected from her feeding tube.

Jon Thogmartin, the Pinellas-Pasco medical examiner, told reporters that the 41-year-old Schiavo would not have lived after her feeding tube was removed even if she had been fed or given liquids by mouth.

"Removal of her feeding tube would have resulted in her death whether she was fed or hydrated by mouth or not," Thogmartin told reporters.

The autopsy also confirmed that Schiavo's mind was compromised at the time of death. "There's nothing in her autopsy report that is inconsistent with a persistent vegetative state," said Dr. Stephen J. Nelson, a medical examiner who assisted in the autopsy.

Thogmartin also said Schiavo was blind, her brain was half its normal size and she was suffering from severe osteoporosis at the time of death. Her "bones were pulpally soft from severe osteoporosis," Thogmartin said.

"The brain weighed 615 grams, roughly half of the expected weight of a human brain. ... This damage was irreversible, and no amount of therapy or treatment would have regenerated the massive loss of neurons."

Her parents, Bob and Mary Schindler, had fought their son-in-law, Michael Schiavo, in court for seven years over her fate.

The Schindler family's attorney, John Gibbs III, said the report still leaves many questions unanswered.

Gibbs questioned the finding that there was no abuse, and said the window of time where Schiavo was unconscious after her Feb. 25, 1990, collapse is troubling. Gibbs said Schiavo collapsed at 4:30 a.m. but her husband did not call for help until 5:40 a.m. and she did not receive medical attention until 5:52 a.m.

"Those 70 minutes are very, very troubling," Gibbs told reporters Wednesday. "Clearly, when you have a brain that is not getting blood, these are emergency moments and every second is precious. 4:30 to 5:40 is a significant time period."

He said the family plans to discuss the autopsy with other medical experts and may take some unspecified legal action.

"We are, at this point, examining every option and no decisions have been made," Gibbs said.

Michael Schiavo's attorney, George Felos, said his client "was pleased to hear the hard science and evidence of those findings."

"It's a hard fact, it's a scientific fact that Terri Schiavo was blind," Felos said. He said Michael Schiavo plans to release autopsy photographs of her shrunken brain in the near future.

In Washington, White House press secretary Scott McClellan said that the autopsy results did not change the president's position on her case.

"Our thoughts and prayers remain with her family and friends," McClellan said. "The president was deeply saddened by this case."

Thogmartin said doctors treating her in the hours after her collapse tested her thoroughly for signs of abuse and trauma and did not find anything.

Thogmartin said the investigation was unable to determine what caused Schiavo's collapse.

The autopsy revealed there was no conclusive evidence that Schiavo had an eating disorder. Thogmartin said Schiavo reportedly drank a lot of tea and caffeine could have led to her collapse in 1990, but is unlikely.

"No one observed Mrs. Schiavo taking diet pills, binging or purging, or consuming laxatives," Thogmartin told reporters.

Thogmartin said a review of hospital records of her collapse showed she had a diminished potassium level in her blood. But he said that did not prove she had an eating disorder, because the emergency treatment she received at the time could have affected the potassium level.

The cause of her collapse has never been definitely proven, but testimony in a 1992 civil trial indicated that she probably was suffering from an eating disorder that led to a severe chemical imbalance.

The Schindlers, though, don't believe she had an eating disorder and have accused Michael Schiavo of abusing his wife, a charge he vehemently denied.

Speaking before the report was issued, Michael Schiavo's attorney, George Felos, said the Schindlers continue to engage in a "smear campaign against Michael to deflect the real issues in the case, which were Terri's wishes and her medical condition."

Bill Pellan, chief investigator for the medical examiner's office, said Tuesday that Thogmartin reviewed police reports, medical records and other documents in trying to determine the cause of her brain damage.

During the long legal battle, numerous abuse complaints made to state social workers were ruled unfounded.

Michael Schiavo convinced the courts his wife would not want to be kept alive artificially with no hope of recovery, contending that she made statements to that effect before her collapse.

Her parents doubt she had any such end-of-life wishes and also disputed that she was in a persistent vegetative state. They believed she could get better with therapy.

Over the years, the Schindlers had sought independent investigation of their daughter's condition and what caused it. Abuse complaints to state social workers were ruled unfounded and the Pinellas state attorney's office did not turn up evidence of abuse.

During the seven-year legal battle, federal and state courts repeatedly rejected extraordinary attempts at intervention by Florida lawmakers, Gov. Jeb Bush, Congress and President Bush on behalf of her parents.

Supporters of the Schindlers harshly criticized the courts. Many religious groups, including the Roman Catholic Church, said the removal of sustenance violated fundamental religious tenets.

About 40 judges in six courts were involved in the case at one point or another. Six times, the U.S. Supreme Court refused to intervene. As Schiavo's life ebbed away following the final removal of her feeding tube, Congress rushed through a bill to allow the federal courts to take up the case, and President Bush signed it March 21, but federal courts refused to step in.

The autopsy report was based on 274 external and internal body images, and an exhaustive review of Terri Schiavo's medical records, police reports and social services agency records.


Schiavo Autopsy

The results of Terri Schaivo's autopsy will reportedly be released some time today. There are many motivating factors revolving around the results. Terri's husband hopes that the autopsy will prove that Terri was indeed in a Persistent Vegetative State and that she suffered her stroke as the result of an eating disorder. Her parents and siblings hope the findings will prove that Terri was abused by her husband and was not brain dead. With Terri's life taken, this last remaining battle seems a bit superfluous.

Fox News has a story posted regarding the autopsy and will no doubt keep us posted once the official results have been made public. CNN also has a story posted as well as a live feed of the autopsy report being read (however, you must have a subscription to CNN's audio feature in order to listen).


Tuesday, June 07, 2005

Mom's Story - Part Eight

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
Click here to read Part Six
Click here to read Part Seven

Part Eight:

The years passed, with Vicki undergoing reconstructive surgery nearly every year. With my husband’s new job, along with its astounding medical benefits, we were able to get back on our feet financially. It took many years and a stringent budget, but the day finally came when every single outstanding debt had been paid in full. Again, we remembered the vision I had seen years before, in the basement of our church that dark night, when we knew the Lord would lead us into the future. All we had to do was follow Him, and that is what we had tried to do. Now, years later, our bills were paid, Vicki had successfully undergone many surgeries, and our family was happy.

The first fifteen years of Vicki’s life were peppered with doctors’ appointments, surgeries, recoveries, adjustments, disappointments, and fears. As the years passed, she and I grew closer and closer. As I look back, I see how those countless hours spent together in waiting areas and hospital rooms provided precious times of bonding, understanding, and love. I wouldn’t trade those times. Amazingly, she has said that she wouldn’t trade them either.

One day, when she was about 16 years old, Vicki announced that she had had enough surgery. “If people can’t accept me, that’s their problem,” she stated. “I’m happy with the way I am, and I don’t want any more surgeries.” My husband and I decided to respect her wishes. As all of the critical life-sustaining issues had been addressed, we agreed that she now deserved a life free from the constant threat of surgery, along with its pain, fear, and difficult periods of recovery. I marveled at her resolve and her inner strength.

One day particularly stands out in my memory. Vicki had just been released from the hospital following another complex surgery. A new nose had been fashioned for her, using bone taken from her own hip. Surgical “buttons” had been temporarily sewn onto each side of the bridge of her new nose, to keep the structure from collapsing as it healed. It was not a pretty sight, especially accompanied by heavy black stitches and areas of dried blood. Added to this was the fact that her hip was in pain, resulting in the need to laboriously limp whenever she tried to walk.

We were on our way home from the hospital that day, and I needed to stop at a drugstore to have her prescriptions filled. As I pulled into a parking space at the mall, I was shocked to see Vicki open her car door and begin to painfully push herself out. I stopped her with a firm, “You wait here in the car; I’ll only be a minute.” Her reply amazed me.

“I’ve been cooped up in the hospital for days,” she said. “I want to go in the store and see people and feel normal again.”

It was difficult to hold back my tears as I helped her out of the car and assisted her to slowly walk through the parking lot and into the store. People stared at her, as I knew they would, but Vicki decided to ignore the stares and focus instead on the joy of being out of the hospital. I thought my intention for leaving her in the car had been to spare her embarrassment, but now I wondered if it hadn’t been more to spare myself the embarrassment. As I watched her painfully limp down the aisles, I felt a rush of pride as I realized what she was overcoming just by walking through that drugstore. I saw, as never before, what an amazing child she was, how filled with inner strength and courage, courage which I myself lacked. I don’t know when I’ve ever felt more pride, nor been more filled with humility to realize that God had chosen me for the honor of birthing and raising this amazing little girl.


Thursday, June 02, 2005

Portrait of a Daughter

Pretty soon, this blog is going to belong to my mom, as I've been posting more of her creative work here than my own lately! Here is another poem that she wrote.

Portrait of a Daughter

I held the fresh clean canvas,
Unblemished, incomplete,
Miraculous potential,
Untouched as yet and sweet.

My mind caressed a vision,
My heart joined in the game,
I saw a flawless portrait
Within a perfect frame.

But time revealed some brush strokes
I felt were out of place,
And lines I did not want there
My pride tried to erase.

But then I met the Artist,
His skillful plan unfolds-
The portrait of a daughter
On canvas He now holds.


Wednesday, June 01, 2005

Mom's Story, Part Seven

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
Click here to read Part Six

Part Seven:

Alone now in the waiting room, my husband and I were emotionally nearing the end of our strength. As the hours passed, we prayed together, then sat silently, waiting.

At last Vicki’s doctor appeared, looking tired, but triumphant. “We’ve done all we can,” he smiled. “Everything looks good.”

It seemed no human response to such news was adequate. My heart wanted to burst with joy and thanksgiving, yet all I could do was cry. “Thank You, Lord,” I whispered, but I knew so much more was needed. I would be thanking Him for a lifetime.

That night, as my husband and I drove the long road back to our home, I remembered my fear of that morning, when I had wondered if Vicki would be alive as we drove back home. The faces of the parents we met at the hospital, whose daughter died that day, rose as specters in my mind. They were instead feeling the agony I had dreaded, as they made their way home, without their little girl.

I spent every day after that at the hospital with Vicki. She recovered amazingly fast, and her spirits were high. She looked forward to going home, but being in the hospital didn’t upset her. The nurses were kind, and she looked forward to my arrival each morning, when I’d have a little present for her.

Her head and face were nearly covered by bandages, yet she smiled and laughed. During the extensive surgery, her scalp had been cut from ear to ear, allowing the surgeons access to the interior of her face. Her eye sockets had been moved closer together, false eyelashes had been sewn to her eyelids, and the beginnings of a nose had been fashioned. Many more surgeries would be required in the future, but this was all that could be done for now. Though she must have been in pain, she didn’t complain.

Every night, after work, my husband joined me at the hospital for time with Vicki. Then we went home to spend the evening with our four-year-old son. A few of the other mothers of children staying at the hospital chided me for not spending the nights with my child, as they did. But as the days wore on, I saw that the mothers who spent 24/7 with their children grew bone-weary, impatient, and irritable. I noticed their children became more and more demanding with each passing day, more unreasonable, and they cried a lot. Vicki, on the other hand, was happy to see me each morning, and we spent our days playing and resting together.

One night, as I tucked her in before leaving, I asked if it bothered her that I didn’t stay with her overnight. She smiled and sweetly declared, “No. Jesus and the angels are with me.” I marveled at her serenity and calm acceptance of her situation. Even at two and a half years old, she already experienced the presence of the Lord. That made it easier for me to leave her each night, secure in the knowledge that the Lord was there to comfort her.


The Spotless Lamb

I stumbled across Leviticus 4:32 this evening and it triggered an old, forgotten memory from my youth. The verse says, “If he brings a lamb as his sin offering, he is to bring a female without defect.”

At a very young age, I came across this passage (or one similar to it) and was very hurt, thinking that God was displeased with my deformities. Having a deformed face, I believed that maybe I wouldn’t be allowed into Heaven because God only approved of physical perfection. My heart sank as I realized that the God who had been eavesdropping on all of my prayers was just as shallow and critical of me as the strangers who stared at me in the grocery store. Then I wondered why God would even create me with deformities if he meant to condemn me because of them. Fortunately, I didn’t let my fears go unspoken for too long and I eventually talked to my mom about it. Truthfully, I don’t remember what she told me, but being as young as I was, I was easily comforted, even though the passage continued to perplex me. Yes, the passage didn’t mean that God didn’t love me, but it still didn’t answer the burning question.

Knowing what a verse doesn’t mean is a far cry from knowing what it does mean. I’ve thought about all of this through the years and have asked a few people about it, but still haven’t had many good explanations. But, I think something struck me tonight (it seems so obvious now)!

My answer here is in no way exhaustive, but just a few fresh, random thoughts.

I see now that my confusion as a child stemmed from a common problem – interpreting Scripture with the assumption that a verse is mainly something important that God has to say about me, rather than assuming it has something to say to me…about God.

The animal sacrifices of the Old Testament era was an analogous system set up to foreshadow Jesus Christ. The blood of lambs, sacrificed repeatedly, temporarily took away sin and this system paved a road of tradition and familiarity so that when the Lamb of God came into the world he would be recognized as the final sacrifice.

If I were to be superimposed into the Leviticus passage, I would not be playing the part of the lamb. I would be the man who had sinned. So, it is an unparallel analogy to say that God did not want deformed animals to be used as a sacrifice so that means he doesn’t value deformed human beings.

In order to be a perfect shadow of Christ, the lambs had to be spotless because the Lamb of God that would come to take away the sin of the world would be. If the traditions had allowed for any old filthy, tattered, sickly animal to atone for sin, then Christ’s deity, purity, sinlessness, and perfection could not be assumed. If his purity could not be assumed, he could not be recognized as the Son of God. If he was not the Son of God, his sacrifice would have been just as temporal as the sheep’s and goat’s. But because the Levitical law was explicit - that only perfect, unblemished lambs could be offered, it gives us the confidence that Jesus Christ was not a mere scapegoat, but indeed, the Spotless Lamb who came to take away the sin of the world.

And so I now finally realize that this passage has nothing to do with me and my imperfections at all, but everything to do with Christ and his perfections.

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