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When What Seems Broken is Perfect: The Mother of a Disabled Child Tells her Story
LifeSiteNews ^ | 7/20/06 | Anonymous

Posted on 07/20/2006 4:36:03 PM PDT by wagglebee

(Note: A mother known to LifeSiteNews.com, and who would like to remain anonymous, wrote the following article in response to an op-ed that appeared in the Globe and Mail. That op-ed was written by a mother, calling her self C. Smyth, who told how she chose to abort her unborn child because the baby suffered from a chromosomal disorder. “Isn't it more cruel to bring a child burdened with so many disadvantages into the world?” Smyth wrote.)

July 20, 2006 (LifeSiteNews.com) - The graph is still taped to the inside of my kitchen cupboard, pencil on a string dangling down beside it. It depicts the progression of my newborn daughter’s weight, most days showing a moderate increase, and thus reflects a thriving child. It ends abruptly at 80 days.

Recently, C. Smyth shared her agonizing and very personal decision to terminate a pregnancy after testing revealed a severely disabled child.

My husband and I were faced with a similar difficult decision. We too were in our 40’s, educated and financially stable. We have 5 children at home and we love sports and travel. The kids do well at school, are athletic, and all are healthy as horses. Life was good to us.

We first heard of our daughter’s genetic condition long before she was diagnosed. It was considered a lethal condition, an extra 13th chromosome. Most babies don’t make it to birth and those that do live a few years and are severely disabled. I thought, “Well, what is the point of that life?”

When the geneticist uttered the dreaded words, “your daughter has trisomy 13,” and it was a diagnosis about my baby and not someone else’s, the reality was entirely different. With the ferocity of a lioness, I wanted to love and protect this little girl, and do all that I could for her. If her existence was only to be a few more months of kicks and flutters in utero, then I wanted her to have that life for the sake of both of us. We named her Annie.

After the diagnosis, the research began. It was frantic, and went long into the night for months. I researched medical details and personal stories. We communicated with parents all over the world who had a child with this very rare condition. We discovered that the babies can live longer, but they may need a lot of medical treatment. The most amazing discovery was that the parents continually stated that they treasured and delighted in every day of their child’s life. They knew with certainty that the gift of that life was not theirs to keep. The children, called “survivors” were blissfully happy and progressed developmentally, albeit slowly. It became increasingly clear to us that unless the medical intervention to provide life was excessive, Annie was better off alive than dead.

We were not sure how we could do it. I was the kind of mom who usually forgot to pack a diaper bag. I would often be impatient when one of my children couldn’t master the math skills in their homework. Could I ever develop the patience for a child who may not be able to sit on her own for a year? How could we fit Annie’s care and needs into our busy schedule? We had 5 soccer teams in the summer!   We were more frightened than we had ever had been in our lives. Love for Annie compelled us forward.

Annie was born full term, crying.  She was mildly afflicted, as the syndrome goes. She needed a very small amount of oxygen and had hypoglycemia.  Annie could not take all of her nutrition orally and so she had an NG tube (nasal gastric tube), which was a tube that went in through her nose down into her stomach. I became skilled at its reinsertion, every 3 days. We fed her expressed breast milk. Somehow, we dealt with all of the issues. We knew that with time Annie would take more feedings orally and her need for oxygen would lessen, and likely be eliminated completely.

We knew the first year would be rough. Everyone pitched in. Our 12 year old son took over the lawn maintenance and his older sisters took on Annie’s developmental progress and bought “mind stimulating” music and ordered her a “Bumbo seat” to help develop strength.

The whole family came together in ways that I never dreamed possible. We discovered how true our friends and family were by their support and encouragement. Somehow, the homework got done and the gang made it to their soccer games.

At age 75 days, Annie smiled at us for the first time. Even now, a year later, the memory of that first and only smile causes me to cry.

Annie experienced respiratory distress at age 80 days and was transferred by ambulance to the Children’s hospital. The physicians told us she had pneumonia. Our beloved baby died less than 24 hours later.

There are two ironies to this story.

The first is that we thought we had a choice of life for Annie but the reality is that we did not. The medical records, which we instinctively felt compelled to obtain and have had reviewed, reveal no signs of pneumonia. An effective “Do not resuscitate” was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing.

The hospital issued a letter of apology stating that sometimes “… communication does not occur in as clear and consistent a fashion as we would wish. For that, we are very sorry.” Recent developments in medical science can be used to diagnose and terminate certain lives but the choice to use medicine to prolong these lives doesn’t seem to be an option.

During her 80 days, our little Annie taught us our greatest lessons in life. Through her life, we experience the deepest sorrow and the most intense love. She taught us the true meaning and purpose of life and we are forever changed as a family. Our children have learned that if they are ever in need, their family will love them, protect them and do anything to support them, just like we did for Annie. They developed an incredible empathy for the disabled and the vulnerable.

The ultimate irony is that this little girl who seemed so broken, flawed and seemingly without purpose or value, was in fact, perfect after all.



TOPICS: Canada; Culture/Society; News/Current Events
KEYWORDS: bioethics; cultureofdeath; disability; euthanasia; moralabsolutes; prolife; trisomy13
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To: phoenix0468

I have found that many people in the medical profession are convinced THEY know what is best for YOUR child.


21 posted on 07/20/2006 5:22:17 PM PDT by voiceinthewind
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To: voiceinthewind
And the world is a better place because he is in it.

If they only knew the sway they held over us. :-) I like this one as well. The last two paragraphs hit home.

I Am the Child

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much....whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards...great strides in developement that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable... I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, you healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick. What I do know is infinite joy in simple things. I am not burdened as you are with strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author unknown If you know who the author of this piece is, please e-mail us so that we can give credit where credit is due.

22 posted on 07/20/2006 5:33:07 PM PDT by processing please hold
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To: pbrown

I'm sure some of you may remember Bob "Bobcat" Goldthwait the zany, spasmatic comic from the Police Academy movies.

Although he's an unabashed liberal ("I'm a leftwing lunatic...don't applaud that...there's a real thin line between comedy and dictatorship) but his jabs were comedy tinged with politics vs. politics tinged with comedy like, say, Al Franken.

The bottomline is that this specific performance in 1987, "Meat Bob", is a liberal performance that a conservative can laugh along with especially after he calms down a little and starts talking about his daughter ("Get in the house. We're gonna watch Police Academy 50. Yes again!) but it was the end that is really pro-life and touching.

After joking about how, with all the drugs he did (he's completely clean even then) chances were he was going to have a garbage pail kid with "eight arms, eight legs, 'Hi dad, I'm Mr. Party'" he ends with this (from memory):

"And everyone would say, 'As long as she's healthy.' And I thought to myself that maybe...if my daughter was sick or retarded that maybe I would have to learn patience and understanding and maybe I would have to stop thinking about my fabulous career. So when people again said 'as long as she's healthy' I said 'You know it doesn't matter...I will love her the way she is...(now the liberal tag) as long as she isn't a yuppy f&*K like you."

Just a couple other liberal bits that I still think are funny:

On guns in the house -

"...and you do need to protect yourself sometimes but the statistics are that if you have a gun in the house you are either gonna get shot with it by someone who breaks in or get liquored up and kill Mom. 'That's the worst meatloaf I've ever had in my life, Lady!'

On Reagan -

"So the airtarffic controllers went on strike and Reagan said 'I can fix this. Everyone on strike - you're fired!' So they just hired anyone hanging out at the time. There's like janitors and those hiring are like 'So have you ever played space invaders or something like that?'

"I can't blame Reagan for everything. Blaming Ronald Reagan for the way things are is like blaming Ronald McDonald when you get a bad cheeseburger. Neither of them run the company."

On rock music and suicide -

"So stupid 'My son listened to Ozzy Osbourne and then killed himself.' Well maybe your divorce and being on heroin might have something to do with it."

"...and we're really excited about the album because the record company thinks it will probably go...vinyl."

Any how he does go for the jugular and does cuss but overall he comes across as the liberal he is but there tend to be quite a few pleasant surprises especially the touching ending.


23 posted on 07/20/2006 5:44:19 PM PDT by torchthemummy (Darwinists: Evolution is a theory that is proven fact.)
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To: truthkeeper

God bless you and your precious little boy.

My grandson came home from the swimming pool a couple of hours ago, and helped me shuck sweet corn, one of his favorite foods.

He is now nine years old and a happy, reasonably healthy boy. His grandmother and I are among the luckiest people alive, because he lives with us, as he always has, with his mother and father, our daughter. He was not expected to live. He had several open heart surgeries before he was two and a half years old.

This boy has been God's best gift to us.


24 posted on 07/20/2006 5:44:53 PM PDT by billhilly
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To: billhilly
I know of where you speak. I've raised mine since birth too.

I can't imagine not having him.

25 posted on 07/20/2006 5:50:37 PM PDT by truthkeeper (It's the borders, stupid.)
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To: pbrown

Aw, that was a good one too!


26 posted on 07/20/2006 5:50:55 PM PDT by voiceinthewind
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To: torchthemummy
I certainly remember him. My favorite line..."I can't blame Reagan for everything. Blaming Ronald Reagan for the way things are is like blaming Ronald McDonald when you get a bad cheeseburger. Neither of them run the company." Lolol

"And everyone would say, 'As long as she's healthy.' And I thought to myself that maybe...if my daughter was sick or retarded that maybe I would have to learn patience and understanding and maybe I would have to stop thinking about my fabulous career. So when people again said 'as long as she's healthy' I said 'You know it doesn't matter...I will love her the way she is...(now the liberal tag) as long as she isn't a yuppy f&*K like you."

That was a beautiful thing to say...and so very true.

27 posted on 07/20/2006 5:51:28 PM PDT by processing please hold
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To: voiceinthewind

Thanks. That one never fails to make everything blurry.


28 posted on 07/20/2006 5:53:14 PM PDT by processing please hold
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To: wagglebee
This is the most poignant story I've read in a year.

Thank you!
29 posted on 07/20/2006 6:00:58 PM PDT by after dark (I love hateful people. They help me unload karmic debt.)
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To: wagglebee; american colleen; Lady In Blue; Salvation; narses; SMEDLEYBUTLER; redhead; ...
Thank you for posting this beautiful story of life!

As some of you may recall, a young couple in my parish brought into this world a beautiful boy in November 2004. This was their first child and we were all so excited watching 'mom' blossom during pregnancy. The baby was born with birth defects and rushed into surgery. Doctors did not expect him to live more than 24 hours. Our pastor rushed to the hospital and Michael was baptised and chrismated into the family of God.

Michael defied the doctors! After several weeks, he was released from the hospital and the parents brought him to church where we all oohed and aahed over this precious little child. Just when one condition had stabilized, however, another problem sent him back to the hospital.

Over the next 9 months, the parents took turns at his bedside. Each time he rebounded, hope would spring up but this would be followed by another setback and our prayers rose heavenward. It was like riding a rollercoaster. One wisened old parishioner verbalized what we all felt in our hearts: "God's will be done".

In July 2005, Michael was airlifted to Boston Children's Hospital where he underwent 13 hours of open heart surgery. Afterwards, the medical team that had cared for him, sat the parents down. They explained that every medical procedure known to man had been performed on their precious child and there was nothing more any professional could do.

On July 22, 2005, exactly 9 months to the day following his birth, Michael was placed in the arms of his mother. Our pastor drove 3 1/2 hours to Boston Children's Hospital to administer Last Rites and provide solace to the family. Then a nurse removed the tubes that provided life support and Michael died peacefully, cradled in the loving embrace of his mother and father.

The funeral is one I will never forget. Due to the large turnout of family, friends and others who shared in the joy and pain of this young couple, it was held in a larger church. 3 Maronite priests and 1 Deacon officiated. A young woman dressed in a simple black outfit, led the procession into the church, carrying a large photograph of Michael. She was followed by his tiny white coffin with a beautiful heart shaped arrangement of red roses on its lid. The young parents followed behind, the father holding his beautiful wife and mother of his child, in a strong and steady grasp. ALL of the medical teams that had assisted Michael in life, were there to lend their support and prayers in death. Following the liturgy, a family member stepped up to the lectern to read a poem written to Michael by his parents. In it, they promised Michael that he would always be remembered, especially to their future children. Even the most stalwart, choked back the tears. Following the reading of the poem, the organist played Johannes Brahms' Cradle Song. It was one of the most beautiful and moving tributes of love for the courageous battle Michael fought and the love that surrounded him each and every day of his short life.

On July 7, 2006, Michael's brother Daniel was born. Last Sunday, the young couple brought this new son to church and we all oohed and aahed over him. They beamed with joy and happiness as they posed in front of the altar, Daniel snuggled safely in the loving embrace of his father. True to their word, this coming Sunday, mom, dad and Daniel will return to church to celebrate the 1st anniversary of Michael's death. Just prior to the conclusion of the divine liturgy, Father and the wisened old parishioner will begin to chant the prayers for the dead, in Arabic. Michael's short life will once again be celebrated by the same congregation that prayed for him and his family, in life and in death. He holds a very special and cherished place in all our hearts.

Life is precious ... be it for an hour or one hundred years. Albeit short, Michael taught our parish about the beauty of each breath in life and the final breath that takes us to eternal life ann the Kingdom of God.

30 posted on 07/20/2006 6:18:58 PM PDT by NYer
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To: NYer
Ah, sweet lamb!

Daniel has a "big brother in Heaven." How wonderful to think of his big brother watching over him, interceding for him.

A family I grew up with lost a son at birth. The younger kids thought of him as their "angel brother," and they often included him in their games, just as though he were there.

31 posted on 07/20/2006 7:34:46 PM PDT by AnAmericanMother ((Ministrix of Ye Chase, TTGC Ladies' Auxiliary (recess appointment)))
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To: wagglebee; ImaGraftedBranch
Wow. What a story.

An effective “Do not resuscitate” was ordered without our knowledge or consent.

The damage wrought by Greer and Michael during the Schiavo case is still evident.

32 posted on 07/20/2006 8:01:05 PM PDT by Ultra Sonic 007 (Conservatives teach you how to fish. Liberals give you the fish by stealing it from the fisherman.)
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To: dandelion

Thank you so much for your detailed reply. I'd read somewhere that Americans, who claim 'holier-than-thou' concerning countries where euthanasia is legal, simply have NO idea what really goes on in US hospitals. There is a subtle pressure to remove breathing tubes that is hard to stand up to.
additionally, you say that:
"Doctors are no longer bound by the Hippocratic Oath"
now is that really true? They no longer swear to uphold it, or has it just been so re-interpreted that it's meaningless?


33 posted on 07/20/2006 11:21:50 PM PDT by Sarah
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To: Sarah
NEVER leave the bedside of a very ill hospitalized patient. The hospitals are crazy.

**************

I couldn't agree more.

34 posted on 07/21/2006 3:13:26 AM PDT by trisham (Zen is not easy. It takes effort to attain nothingness. And then what do you have? Bupkis.)
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To: wagglebee
The medical records, which we instinctively felt compelled to obtain and have had reviewed, reveal no signs of pneumonia. An effective “Do not resuscitate” was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing.

The hospital issued a letter of apology stating that sometimes “… communication does not occur in as clear and consistent a fashion as we would wish. For that, we are very sorry.” Recent developments in medical science can be used to diagnose and terminate certain lives but the choice to use medicine to prolong these lives doesn’t seem to be an option.

****************

This is so heartbreaking it leaves me speechless.

35 posted on 07/21/2006 3:18:48 AM PDT by trisham (Zen is not easy. It takes effort to attain nothingness. And then what do you have? Bupkis.)
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To: wagglebee
Pinged from Terri JULY Dailies

8mm

36 posted on 07/21/2006 3:47:08 AM PDT by 8mmMauser (Jezu ufam Tobie...Jesus I trust in Thee)
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To: wagglebee
and very personal decision

Doubtless so personal that even God was viewed as interference.

37 posted on 07/21/2006 3:53:19 AM PDT by HiTech RedNeck
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To: wagglebee
This story hits home in a big way.  I am mentioning our own case because of the unexpected joy which may befall those who choose life, at least what happened to us.

Our own son was born severely retarded and we were told long ago to let him go.  It was a case of oxygen starvation to the brain, possibly due to mom’s pregnancy exposure to a real spill of nuclear reactor radiation at Hanford, no other explanation ever forthcoming.  Whatever, he was in a near constant state of seizure and completely unable to take food, except with patience and innate ability to swallow, could be fed after some time.  

Doctors gave him only months to live at maximum and a terrifying description of the agony we would go through if we tried to keep him alive.   That continued for twenty six years as he remained a severely handicapped “baby” at the same level of development.  He died of rather natural causes of a sickness going around that also laid us parents prostrate as well.

The point is, rather than grief and agony heaped upon us, he was a blessing from God, changing our outlook on life and bringing us joy through his smiles.  We came to appreciate this great privilege and to guard our treasure even as doctors constantly sought to snatch our son from this life, all in the name of “good”.  

For others who may face this decision, it is difficult for sure, but the dread and terror of the prospect are outweighed by the joys and knowledge that a gift from God is granted to us.

No smiles are more pure, no joy is more genuine, no trust more profound  than that from such precious people.

I repeat this because while we are deeply touched by the plight of such parents, we must realize the special gift they have received, one very difficult for us outsiders to comprehend.
38 posted on 07/21/2006 4:09:30 AM PDT by 8mmMauser (Jezu ufam Tobie...Jesus I trust in Thee)
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To: Sarah
The hospital issued a letter of apology stating that sometimes “… communication does not occur in as clear and consistent a fashion as we would wish. For that, we are very sorry.”

Talk about your non-apology apology! Talk about unclear communication!

Make no mistake about it, what they are sorry about is the parents learning about the fact that the doctors and nurses murdered this baby. What was not communicated during the hospitalization was the fact that the doctors and nurses intentionally withheld care from Annie because they believed she should not be alive. They didn't tell the parents what they were doing (or not doing) because they believed that the parents were not responsible people and would not do the right thing (let Annie die) because they had acted so irrationally and done the obviously wrong thing in the past (work for Annie to live).

So, they pretended to give care, but didn't. No antibiotics were even ordered. That's why they destroyed the medication records. So, now that the hospital knows, what is it doing? Assisting the cover-up.
.
The doctors, hospital, and nurses should be sued. The doctors and nurses should be criminally prosecuted and lose their licenses.
39 posted on 07/21/2006 4:39:29 AM PDT by Iwo Jima ("Close the border. Then we'll talk.")
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To: Ultra Sonic 007
No this damage was present long before the Schiavo case. That case only made more people aware of what was going on.
40 posted on 07/21/2006 4:40:42 AM PDT by Iwo Jima ("Close the border. Then we'll talk.")
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