Wednesday, April 27, 2005

Broken Wings

Here is a poem that my mother wrote.

Naive with dreams of what would be,
I birthed a baby girl. But she
Arrived, a fragile, damaged thing,
A baby bird with broken wing.

Those days were dark, the nights so long,
Little bird cried her joyless song,
While I, with heart despairing, cried
To know my cherished dreams had died.

But then one day I raised my eyes
And found my healing in the skies,
For there, though cloaked in mystery,
I somehow glimpsed eternity.

Where children, damaged, incomplete,
Stood tall and ran on golden streets.
My heart rejoiced as grace revealed
That every broken wing was healed.


Monday, April 25, 2005

Mom's Story, Part Two

This is part two in a series, click here to read Part One.

I took a deep breath and slowly lifted the blanket from my baby’s face.

My breath caught in my throat. Everything around me seemed to fade away. Time stood still as I looked into the face of the baby I had so long anticipated.

Her eyes were awkwardly situated near her temples.Two small holes were where her nose should have been. Her mouth was crooked. A large mass of flesh rose from one side of her forehead, while smaller lumps of protruding skin dotted her cheeks and chin.

Gingerly, I picked up the pink-blanketed baby and struggled to get us both into bed. When I looked across the room to the other mothers, they quickly averted their eyes, suddenly intent on their own newborns once again. News travels fast in a hospital. They apparently already knew that something was wrong with my baby.

Later, after the infants had been wheeled back to the nursery, the obstetrician came to my room. He solemnly drew the curtains around my bed, then spoke in subdued tones. He had no idea what my baby’s condition was nor what might have caused it, he admitted. Further, he could give no prognosis for her future, other than that she would undoubtedly be blind and mentally deficient. Having told me that, he swept the curtains back and swiftly fled from the room. I felt as though speaking to me had been nothing more than an annoying task on his busy to-do list, and now it had been thankfully accomplished.

Family members came to visit. Conversation was strained, and no one stayed long. No one asked to see the baby. My own mother and father were at a loss as to how to act or what to say. Even my husband seemed distant, no doubt consumed by his own particular grief. I felt alone, adrift in a sea of confusion and heartache.

Seeking to escape the awkward silence of the hospital room, I shuffled down the hallway, desperate to find a place where I could be alone and pour out my heart. I found that place behind a door labeled “Sitz Bath.”

I tried to pray, but all I could do was weep. All my hopes and dreams for the perfect little girl had dissolved, replaced by grief and fear. When my tears were exhausted, I turned to the Lord. “I’m afraid,” I whispered to Him. “What is going to happen to this little baby? Will I be able to take care of her? Will I even be able to love her?”

I felt as low as I’ve ever felt in my life. But the Lord heard my prayer. Suddenly an unusual thought came to my mind. Look at 2 Corinthians 4:17-18. I was puzzled, but also strangely expectant. I hurried back to my room.


Joni and Friends Summer Family Camp

It is not to late to still sign up for a Joni and Friends summer retreat. Whether you are the parent of a disabled child and would like your family to attend, or you would like to sign up to volunteer at a family camp, you can still go to Joni's site and sign up. Here is some of the information they have posted. For more details, go to Joni's website or contact JAF at (800) 523-5777.

Since 1991 Joni and Friends Family Retreats has hosted five-day summer programs across the United States where families affected by disability can find hope get a break from the challenges of everyday life.

If your family is affected by disability, we invite you to pack the car and join us this summer at one of our fifteen retreats. Browse the family information section or check out the family registration.

Our volunteer opportunities are a great way to engage in serving others in a fun environment. Browse the volunteer information section or check out the volunteer application.

While you're here, browse through our 2005 schedule. There are also opportunities to help support Family Retreats and find referrals to other camps and conferences that serve families affected by disability.

If you are a church leader, we're here to serve you.

We're proud to be a part of the Christian Camp and Conference Association and the Evangelical Council for Financial Accountability.

Labels: , ,

Monday, April 18, 2005

Mom's Story, Part One

Every Monday morning for the next six weeks or so, I will be posting portions of my mother's testimony. This is the story of my life, told through her eyes. Here is Part One.

I had dreamed of having a little girl for as long as I can remember. Having had a wonderfully close relationship with my own mother, I longed to experience that kind of closeness with a daughter of my own. My husband and I already had a two-year-old son and had lost an infant daughter three years before his birth. Then there had been two miscarriages; but now, at long last, I hoped and prayed that the child I carried would be the little angel I had so long desired.

As I lay on the table in the hospital delivery room, I suddenly knew something was wrong.

The atmosphere in the room changed from light-hearted banter between the doctor and nurses to a hushed, tension-filled silence. The cheerful music that had been playing in the background was switched off. The overhead mirror, which allowed me to view the birth, was turned away. Casual conversation turned to whispered directives as my baby was delivered. Something was very wrong, but all I could ask was the one question I had harbored for so long, “Is it a girl?”

“It’s a girl,” the doctor replied curtly.

The umbilical cord was cut, and the baby was handed off like a football to a waiting nurse, who rushed the infant out of the room. In silence, I suffered a flock of unanswered questions as the attendants completed their tasks. I was carted to the recovery room, where a nurse told me only that my baby had some physical problems. Then I was left alone, still with no answers.

I hadn’t dared to ask. I didn’t want to know.

It wasn’t customary in those days for fathers to be present in the delivery room, so I had no idea if my husband knew anything more than I did. I wished he were with me now.

I was wheeled to my room, which I would share with two other new mothers. I heard them talking and laughing as I approached, but when I entered the room, they froze into silence. I felt their eyes on me as I painfully crawled into bed.

Later, three nurses arrived, each pushing a tiny crib on wheels containing a newborn. I watched as two of the nurses lovingly scooped up a baby and gently handed it to its mother. The third nurse, with downcast eyes, wheeled my baby to the side of my bed, then turned and hurried out the door. I already felt rejection from the other mothers. Now, apparently even the nurse didn’t want to so much as touch my baby. It was the first of many hurts to come.

While the other mothers cooed to their babies, I forced myself out of bed, to stand at the side of the little crib. With heart pounding, I looked down at the tiny bundle tightly cocooned in a pink blanket. Her face was covered.

The other mothers, apparently apprised of my baby’s situation, pretended to fuss over their babies, but I knew each one was darting glances in my direction, eager to see my reaction when I looked at my baby for the first time.

I was afraid.

Already I felt like a failure as a mother. I should be filled with love and joy, I scolded myself. Instead, all I felt was dread.

I took a deep breath and slowly lifted the blanket from my baby’s face.


Wednesday, April 13, 2005

Defining Disability

An article currently on the Fox News homepage has sparked what will, no doubt, be an endless stream of discussions regarding the proper definition of "Disability." I am sure once everyone puts in their two cups of sugar and the P.C. movement rolls in to ice the cake, we will all be more confused than we ever were to begin with.

Some of the questions being asked are:

1. What does it mean to be disabled?
2. How should "normal" people react to those with disabilities?

My brain has no choice but to shift into its hyper-philosophical mode when I read questions like that. I understand that disabilities are real. It is a tangible concept and the fact is, some people have them and some do not. But that fact not withstanding, my rebuttal question would be,

What does it mean to be normal?

Three observations:

1. We cannot put every human being into two cut-and-dry categories as general as "disabled" or "normal." There are scads of strange people roaming the planet who have no legitimate "disability" but they are also far from "normal."

2. There are also people in the world who are legitimately disabled who, by every definition of the word, are completely "normal."

3. Treating disabled people with love and respect is not a lesson simply for the strong and healthy. (It's not like we disabled people cannot also be unengaging, judgmental, shy, socially akward, or clueless at times ourselves)!

I think it comes down to common decency. If you don't like being treated like you're a moron, then chances are other human beings -- normal and disabled alike - also don't appreciate it. That should be your guide -- the good ole Golden Rule -- treat people the way you hope to be treated. It's all pretty simple.


Monday, April 04, 2005

Poles Apart

A recent Zogby poll shows that, contrary to the Fox Poll, most Americans in fact do not agree with the decision to remove nutrition from Terri Schiavo (or those like her). It seems that we have once again fallen victim to the "fuzzy math" of the mainstream media statistics.

Polls leading up to the death of Terri Schiavo made it appear Americans had formed a consensus in favor of ending her life. However, a new Zogby poll with fairer questions shows the nation clearly supporting Terri and her parents and wanting to protect the lives of other disabled patients.

The Zogby poll found that, if a person becomes incapacitated and has not expressed their preference for medical treatment, as in Terri's case, 43 percent say "the law presume that the person wants to live, even if the person is receiving food and water through a tube" while just 30 percent disagree.

Another Zogby question his directly on Terri's circumstances.

"If a disabled person is not terminally ill, not in a coma, and not being kept alive on life support, and they have no written directive, should or should they not be denied food and water," the poll asked.

A whopping 79 percent said the patient should not have food and water taken away while just 9 percent said yes.

Labels: ,