{"id":1131,"date":"2006-06-14T14:43:36","date_gmt":"2006-06-14T14:43:36","guid":{"rendered":"http:\/\/blog.beliefnet.com\/viamedia\/2006\/06\/life-matters.html"},"modified":"2006-06-14T14:43:36","modified_gmt":"2006-06-14T14:43:36","slug":"life-matters","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/viamedia\/2006\/06\/life-matters.html","title":{"rendered":"Life Matters"},"content":{"rendered":"

There seems to be something about the Christian, and in its roots, the Jewish ethical vision that brings balance into a world frought with struggle and the temptation to just be done with it. I suppose what it all comes down to is the definition of life as a gift. As a gift it’s to be nurtured and treasured, but not controlled or manipulated in a way that violates the truth that if it is a gift, there must be a Giver. So despite a few mishaps along the way (say, a certain fatalism among some Christians that works against provision of medical care), and the truth that individual Christians do not always get things right, by any means, or that the vision can’t go off course, it seems to me that in this world of ethical options, it’s the Judeo-Christian vision that holds the line, that strikes the balance. Everything else seems to devolve into utilitarianism and exploitation.  I’m sure some of you can cite philosophers and historians who have articulated this in much more learned ways than I can.<\/p>\n

I think of this because of a raft of stories I’ve come across in the past few days. I’m gathering them all into a single post because they all resound with the same echo as I read them:<\/p>\n

A tiny baby – born the size, according to the story, of a "cell phone" – comes home, healthy.<\/a><\/p>\n

(Via American Papist<\/a>)<\/p>\n

US Open golfer was born 3 1\/2 months premature:<\/a><\/p>\n

\n
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If you want to suggest that Tiger Woods and Phil Mickelson embody this national championship, then feel free; others would insist it’s Fujikawa. All 5 feet 1 inch and 135 pounds of him.<\/p>\n

You think that’s small?<\/p>\n

How about 1 pound, 15 ounces?<\/p>\n

“The doctors didn’t even consider him an infant," said his mother, Lori Fujikawa, who gave birth 3 1\/2 months prematurely. “They said, `You have a fetus.’ His skin was transparent, pretty much. His lungs weren’t developed. So everything that has brought him to today is all by machine and the doctors and the nurses over at Kapiolani Hospital [in Honolulu]."<\/p>\n

Tadd Fujikawa knows the story, having first heard it when he was 8 or 9, especially the part where doctors said his chances for survival were 50-50.<\/p>\n

“I think that it’s really something special that I’m actually here," said Fujikawa.<\/p>\n

“Here" does not mean the vaunted grounds of Winged Foot.<\/p>\n

Though only a high school sophomore-to-be, Fujikawa thinks deeper than that. He said he feels fortunate “for being alive."<\/p>\n

Then he smiled.<\/p>\n

“I’m really grateful for that."<\/p>\n<\/blockquote>\n<\/blockquote>\n

(thanks to constant commenter RP Burke!)<\/em><\/p>\n

A month ago, a little girl named Katie McCarron was murdered by her mother, Karen who is a pathologist.  Katie was diagnosed autistic, and had been living with her grandparents and father near a specialty clinic in North Carolina, while her mother stayed in Illinois.  In early May, the family had reunited back in Illinois, and a few days later, Karen McCarron took her daughter out, suffocated her, walked back through the house in which family had gathered, carrying her daughter’s body, saying she was asleep. Then, a few hours later, she called paramedics, saying her daughter had stopped breathing.<\/p>\n

Some have been quite bothered by the coverage of this case, which has emphasized the difficulty of caring for a child with autism. Disability advocates have worried about the implicit message of this coverage, saying that it communicates that some people are better off dead, and criticizing the coverage for failing to emphasize the fact that Karen McCarron barely even spent time with her daughter, for whatever reason.  Some have pointed at representatives of autism groups, claiming that their statements have even fed this impression.<\/p>\n

Katie’s grandfather, Michael McCarron has been at the forefront of keeping his granddaughter’s memory alive and detailing the truth of her situation. Not Dead Yet, the disability rights group, has devoted a page to Katie McCarron and information about her case.<\/a><\/p>\n

Another place where commentary has raged has been the blog Autism Vox, run by the mother of a son with autism.<\/a> It’s here that you’ll find this post from Michael McCarron:<\/a><\/p>\n

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I would like to thank all of the people who post to this site. Your comments of support have been so moving, I will never be able to thank you enough.<\/p>\n

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie\u2019s pain; let me assure you that \u201cKatie was not in pain\u201d. She was \"Katie\"<\/a> a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children\u2019s songs as my wife would sing along with the CD that would be playing, their own version of \u201ckaraoke\u201d . She liked to dance, she loved to do the \u201chooky poky\u201d. She loved being in among flowers and tall grass. She would say \u201cI like grass\u201d. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.<\/p>\n

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.<\/p>\n

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.<\/p>\n

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.<\/p>\n

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved \u201cteletubbies\u201d and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness. <\/p>\n

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as \u201cunderstandable\u201d or devalue her in anyway without my personal challenge to them and the organizations they represent.<\/p>\n

I must apologize for the length of this post, please know that I keep each of you in my prayers. <\/p>\n<\/blockquote>\n<\/blockquote>\n

What love. What faith.<\/p>\n

Finally, from Stephen Hand, astonishing continued development from his son, Jeremy:<\/a><\/p>\n

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June 13, 2006 <\/span><\/strong>The Patient Manager at Waltham Kindred Care Unit told three of us family members and Jeremy yesterday before we left, "I don’t know if any scientific explanation can ever explain what has happened to Jeremy. We may never know. This is not what we expected". <\/p>\n<\/blockquote>\n<\/blockquote>\n

This is not what we expected<\/em>. <\/p>\n

And that is what it all comes down to. We don’t expect to have a healthy child who’s survived a difficult beginning. We don’t expect to have a child with a serious handicap. We don’t expect to be handicapped. We don’t expect to spend ten years caring for a parent, spouse or sibling in declining health. We don’t expect suffering, we don’t expect limitations, we don’t expect to have to totally readjust our sense of what life is all about.<\/p>\n

To see life as anything else but gift propels us, inexorably, in the direction of playing the giver. What an unoriginal observation, but one that we need to be reminded of every day. In this life, we struggle, with the gift of creativity and invention God has given us, to make our physical lives better, to cure diseases, to alleviate suffering, and that is what God wants us to do. But we veer on the wrong, the deadly road when we start seeing those who carry the disease, who bear the suffering as problems<\/em>, not gifts of God, when we go off balance and stop seeing each person as a son or daughter of God, passionately loved by Him, not our property, not our projects to perfect. But gifts. Mysterious gifts whom we are called to care for, love and help heal until it is time to let go and let God embrace his own, once again.<\/p>\n

Not what we expected.  <\/em>But then – that is the essence of the most beautiful gifts – they are never what we expect, are they?<\/p>\n","protected":false},"excerpt":{"rendered":"

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