Skip to comments.Are We This Pro-Life?: Parenting Special-Needs Children
Posted on 10/05/2004 10:43:27 PM PDT by Mr. Silverback
Sharons prenatal ultrasound looked ominous. She knew others with similar ultrasounds who had delivered perfectly normal children, but all indications were that her child had Down Syndrome. He was one of those infants who typically wind up in the trash, either aborted or abandoned. Because of their worldview, however, Sharon and Burt Kettinger chose to keep the child.
B. J. was a month premature, with two heart defects. Vital functions stopped three times in a twenty-four-hour period. He was hospitalized nearly five months. Surrounded by specialists, the parents soon found life very exhausting. Complicating it further were insurance challenges. A doctor belittled Sharon, saying she had acted very irresponsibly in bringing one like him into the world.
B. J. couldnt walk until age 3. At age 15, he still has trouble with speech. Yet when anyone says Down Syndrome child, his parents Burt and Sharon respond, He is first a child, who happens to have Down Syndrome.
Four out of five marriages in this situation, break up under the strain. When a father sees the long-term commitment required, he often abandons the mother at the time she needs help most.
The Kettingers stayed together, but a special needs child needs supplemental help. Church friends arranged transportation for Sharons fifty-eight-mile daily round trip to the hospital. Neighbors helped with laundry, vacuuming, and meals. A nurse watched B. J. so Sharon could attend church.
And the exhaustion in part destroys the families, so parents critically need relief. Parents need time away from their child so they can focus on their relationship. Friends have stayed with B. J., once for twelve days. One church provides a regular respite evening for children, including some 40- or 50-year-olds.
To make it all work Burt stresses the need for volunteer training, spiritual responsibility, and patience, and familiar with C.P.R. Sign language can be helpful, and a hundred details need to be in place. It demands that the Church be the Church.
Burt says, God isnt looking for experts, but those who are willing and not afraid to learn. Kids with special needs will respond more slowly, but their emotions are intact. Praise and humor go a long way.
B. J. is a Big Job, but hes also a Big Joy. Burt observes, B. J. can make almost anyone smile. He has unending empathy for others. . . . In terms of heart and spirit, he outdoes us. When he earned AWANAs Timothy Award, another child exclaimed, Wow, hes pretty smart for being retarded!
What does it mean to be pro-life? Just signing petitions and affirming an abstract concept? Or responding to needs when you meet a couple who followed their pro-life convictions by giving birth to a special needs child they could have aborted?
We salute the Kettingers and others who have ignored the pro-choice rhetoric and made the difficult, courageous choicegiving birth to a child they knew would have special needs. And three cheers for all the volunteers who have helped out over the years. Parents like this need a handnot just in applause, but in lifting the extra burden.
Burt summarizes, Its one thing to sing, Blessed is he who comes in the name of the Lord, but another to be the one coming in Gods stead.
Whoa, what a moron.
This doctor would be signing soprano through missing teeth if he so much as spoke one word of that to my wife.
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Abortion is NEVER an option, except in the terrible case where a physician must choose to save one life instead of losing two. To affirm otherwise is to embrace the unspoken notion that we are the masters of our fates and the captain of our souls. These children, too, are arrows in a quiver. God is sovereign, and this, too, is part of His sovereign plan, a part He will bless.
"A doctor belittled Sharon, saying she had acted very irresponsibly in bringing one like him into the world."
Wow, I sure hope people like this get to decide whether or not I should live or die one day!
Modern man's god complex will be the death of us all.
It is said that God never gives you what he knows you can't handle. He must have the utmost confidence in my parents-- I know I have the supreme confidence and admiration for them and anyone who cares for special kids.
June 5, 2003 - a day I will never forget - the day we got the results of the amniocentesis. One can never know how you will respond to the news that you are expecting a child with special needs - in our case, a child with Down Syndrome. We struggled with the decision, but after prayer and soul searching, we both realized that God had a plan and this baby was still our responsibility. Soon we learned that we were wrong - our baby was a precious gift.
We also considered ourselves lucky - our son was born in September without any significant health issues (50% of babies with Down Syndrome have some type of heart defect). We decided that not only would our son be raised in the same manner as his older brother (3 yo), we also were determined to do everything possible to help him achieve the impossible. I cannot say enough about the job my wife has done - working with him constantly to facilitate development of motor skills, oral skills, etc. And we have also had the assistance of some amazing therapists (most provided by our state at no charge - they actually come to our home).
So what has happened in the past year? Well, for starters, our son was crawling by his first birthday - in fact, he is now all over the house into everything he can get hold of. He also pulls himself up to a standing position, eats everything in sight, plays with his older brother (actually, harasses him quite a bit), yells, laughs, giggles, cries, stretches his arms out to be held - in other words, he behaves like your typical one year old.
When I come home from work at night and look into his eyes, he smiles - a huge smile. A smile that says thank you - thank you for allowing me to come into your life. But, I owe much more to him, as he has taught me so much in his first year of life. I cannot imagine life without him.
Shortly after June 5, 2003, once we had made the decision not to terminate the pregnancy, we had pretty much resigned ourselves to being a two child family. We could not imagine taking the chance of having another child - the emotional strain alone seemed like too much to bear for a second time. After our son was born and we realized the amount of work it might take to raise him - work that will likely continue throughout our lives - we once again realized that 2 children would be it.
With hard work, prayer, and the support of family and friends, we had convinced ourselves that there was no reason to change our plans for a larger family. On June 5, 2004 (yes, June 5), we learned that we were expecting our third child! And, since then, all of the prenatal testing has come back negative! We will soon (end of January) be a three child family, just like many of our friends and neighbors. A family with three beautiful, healthy children that we love dearly - it's now just a side note that one of them happens to have Down Syndrome.
And please do me a big favor - the next time you meet an adult or child that happens to have Down Syndrome, please remember this story. Remember that a person with Down Syndrome and their family are no different than you and your family - no pity or sympathy is needed (or warranted). Don't look away - you look foolish when you do that. Rather, look beyond the disability - you will see someone that can achieve more than you can ever imagine - someone that can teach you a lot about life and God's love for all of us.
Amen! What a testimony! The Lord does only good.
And I am still pro-life!
When I finally talked my husband into having another child after about 12 years, I had four miscarriages in 13 months. After another 13 months without any pregnancies (which just happened to correspond to the period of time when I stayed up late watching the Impeachment Hearings in the den-:o)), I got pregnant at 43 with our now 5 year old.
And I am still actively pro-life!
I love talking to anti-life defenders, and after telling them I am strongly pro-life, they tell me that I just wouldn't understand what it would be like to have a child born with birth defects. I let them go on and on. When I finally tell them my story, they suddenly become dead silent with a dropped mouth. It's fun watching their whole argument just disappear!
Believe me...I understand!
And I am still actively pro-life!
Your post is a joy to read.
Having a "Special Needs" member of the family -- as you are finding out -- is indeed a great responsibility but also a great blessing.
I sometimes think the way our society is weeding the handicapped out at the root that is the womb (or as embryos, even, for those who Really like to Plan their Families or overcome their own handicap of sterility), has a twofold effect.
On a somewhat superficial and base selfish level, it leaves folks unable to appreciate how truly blessed they are to be "Ordinary." They become susceptible to the sort of morbid dissatisfaction that comes from failing to be an American Idol of some sort or which results in eating disorders, self-mutilation and other repercussions associated with having failed to be perfect somehow ... in looks, brains, talent, etc.
But there is also that fundamental level where -- absent the opportunity to learn in person that a child with brain damage or genetic malfunction is every bit your essential "equal" (or sometimes "better") as a human being and having as a given the option to kill on sight such sub-humans -- I think we end up with a very skew notion of what is and is not Essentially human.
My aunt has brain damage likely the result of being caught in the birth canal during a difficult labor. She has taught me more about what it is to be human -- or glimpse a real live angel, sometimes it's hard to tell -- than almost anyone I know.
=== Amniocentesis. One can never know how you will respond
But it's possible folks of the "Healthy Babies [only]" mindset at the March of Dimes who perfected amnio probably were wagering most would kill the child.
The OB-Gyn of a friend of mine told her when the question came up that, unless she were equal to aborting the child, there was really no point to performing the amnio in the first place. (It's true the March of Dime did perfect the procedure on "to-be-aborted" women for a reason.)
Oh for the day when no one ever knew if they were having a boy or a girl, even.
Every moment is precious. Life is precious. Even if it's short it can be filled with joy, humor and love...
...and Popsicle sticks. Lots and lots of Popsicle sticks and glue... ;-)
Earning an award in AWANA is a considerable achievement. The kid prolly knows more scripture from memory than the Doc who condemned him has ever read.
You are so right. Not a day has gone by that I haven't felt the deepest grief and pain for my son. And there hasn't been a day when he's felt sorry for himself. Not one day. He's teaching me more about courage, strength and heart by his example than I thought possible. Try feeling sorry for yourself when your kid can't go a day without nearly dying. Try to feel sorry for that kid when he gets up, brushes it off and goes back to playing. Yup. These kids DO teach us what it means to be human.
I'm really grateful to have stumbled across this thread tonight. It's good to have a reminder. Thank you.
As I tell mine - "You're the rainbow in Mom and Daddy's sky."
It turned out that Matt had an excellently dry sense of humor, was a baseball statistician, an amateur meteorologist, and held firm political beliefs. He was, however,often unwashed and disheveled. He talked to himself as he walked through town to his job. He lived alone and it seemed to me that Special Olympics was his primary outlet and the source of all of his socialization.
One day, he fell down the steps at work, struck his head, and died. My wife and I thought we would be among the few mourners at the funeral service. We came early, sat in the front of the church with the family, and listened to the organ music. Just before the service was to begin, I noticed some noise behind me and turned around. I was shocked to see that the church was filled to standing room only - with friends, teachers, coaches, doctors, coworkers, bus drivers, police officers, therapists... It was larger than any funeral I had been to before.
In his need, Matt had called upon hundreds of people to give of themselves to help him along in life. I am firmly convinced that God places these special people in our midst to help us exercise the best parts of ourselves, our compassionate natures.
This is one of the favorite stories of my life and has formed the experiential basis for many big decisions that I have made. I am fiercely protective of those with special needs. I am also the adoptive father of my two special needs sons.
We went through all of that, except that our daughter, who has DS, was born with very few of the markers for the syndrome. She's a bit behind her brothers, but she is really such a joy. When she comes to church, she dances and raises her hands to praise God. She loves music and people. Will my life be difficult? Yes, probably. But, I have 4 kids; it's bound to be difficult anyway.
We went through all of that ultrasound stuff and knew Joanna was going to be special. When I was confronted with the prospect of destroying her, I thought to myself,'which of my children would I abandon if, God forbid, they should happen to meet with a catastropic accident that would leave them mentally or physically disabled?' Of course, I would abandon none of them. So, why would I do this to my daughter who happened to be born with a few differences? The answer was simple. Today, I'm overjoyed to have Joanna in my life, and I wouldn't have it any other way.
"It's easy to do the wrong thing, but it's hard to live with yourself; it's hard to do the right thing, but it's easy to live with yourself." quote by Rev. JW Nevius
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