Difficult Decisions

Courage, Disability, Down Syndrome, Family Challenges, Inspiration, Parents 2 Comments »

Although prenatal testing is widely used, it is not perfect. I have a friend who told me of her daughter’s unnerving experience:

The day started out as any other. She was 16 weeks pregnant with her second child. It was time for the monthly visit to the obstetrician. She was told there would be a routine test given called an alpha fetoprotein test. This could determine any abnormalities like spina bifida , anencephaly, Down syndrome, or other chromosomal problems. The test was given and she left the office to run other errands. A few days later, she was called and asked to come in with her husband to talk with the doctor. When they got there, he said it was the worst test he had ever seen since he had been practicing. He then explained to them all of the abnormalities that this child could be born with. He was very discouraging and told them that they could choose to have a “therapeutic reduction” rather than take a chance on a severely “handicapped” child. Without hesitation, they both said they would not consider that as an option. ” Therapeutic reduction” is the politically correct term for abortion. Their belief that this was a child would not allow that. So for the rest of the pregnancy much praying, reading, studying, and preparing was done. At the delivery there was on hand a neonatal specialist to evaluate and observe the abnormalities. A beautiful, healthy, perfectly formed little girl was born. She is now a lovely 14 year old young lady who is the joy of her family, her friends, her school, her church, and her community. What if she had been “reduced” ?

Other pregnant women whose test results are normal may give birth to a baby with Down syndrome. There are a number of blogs relating such experiences when the birth is a total surprise.An excerpt from a recent blog indicates the difficulty in accepting this revelation:

I knew the minute I saw her that she had Down Syndrome and nobody else did. I held her and cried. Cried and panned the room to meet eyes with anyone that would tell me she didn’t have it. I held her and looked at her like she wasn’t my baby and tried to take it in. And all I can remember of these moments is her face. I will never forget my daughter in my arms, opening her eyes over and over…she locked eyes with mine and stared…bore holes into my soul.

However, an investigation by the Associated Press concludes that some inherited diseases and chromosome aberrations are declining and others have nearly disappeared, a trend that is credited to the increased use of genetic testing either before or after conception. A growing number of people are getting tested for genetic mutations before they try to get pregnant, while increasing numbers are screening embryos and fetuses and continuing only with those that get a clean bill of health.

One biology professor at a noted state university views the termination of a pregnancy of a child with Down syndrome as a moral imperative. Many physicians and counselors are not well informed about Down syndrome and fail to present the positive views that many parents experience.

There is a contradiction in our society’s increasingly friendly attitude toward people with disabilities and its obsession with developing more revealing genetic tests. If we are so willing to screen aggressively to find these disabilities and then potentially abort the fetuses, what does that say about the value of the lives of those people living with the disabilities?

Abortion is a private, personal choice. Perhaps the dilemma could be softened if people were advised about other options, if they were given more information on which to base decisions. In our next segment we will investigate alternatives to “therapeutic reduction.”

It’s easy to tell when Billy has been looking at family photos.
He will always ask, “You member I played that toilet paper?”
We can’t imagine life without Billy’s presence.

What do you think about this issue? Can you suggest options?
Have you had to make difficult decisions?


Beautiful People (Part 3): A Beautiful Friendship

Auburn University, Disability, Down Syndrome, Education, Friends, Inspiration, Special Education, Teaching, Western Carolina University 1 Comment »

During my graduate work at Auburn University, I taught a demonstration class for children with intellectual disabilities. Billy and several other children rode with me from Columbus, Georgia during the summer to attend the class with local children. During our first summer, we met Steve Hinton, who was also a member of the class.

Steve, who has Down syndrome, became Billy’s best friend. His parents were professors at Auburn who, like me, were devoted to finding the best education possible for their child. One teacher who observed the class said that he had never seen a more beautiful friendship than the one between Billy and Steve.

After we moved to Auburn Steve and Billy were together each day at their regular school. They were so close that they talked on the phone after school every day and visited with each other frequently. We went with Steve’s parents to their home at the lake where the boys played in the water and Steve tried to teach Billy to swim. They put on concerts for each other, pretending to be their favorite singers. Billy had never had a real friend before.

When I completed my work at Auburn, we moved to North Carolina where I had accepted a teaching position at Western Carolina University. We regretted leaving Steve and promised to return and to expect visits from him. Although thrilled with our new home, we were somewhat concerned about Billy’s adjustment, especially being apart from Steve. When we opened our first phone bill, it was apparent that Billy and Steve had maintained their practice of talking with each other every day after school. As amazed as we were, we realized that we hadn’t explained the difference between local and long distance phone calls. We also acknowledged our surprise and delight that Billy had managed to make the calls.

Steve spent a week with us in North Carolina and whenever I visited my mother in Georgia, Billy spent time with Steve in Auburn. It was always as if no time had elapsed since their last encounter. They were still best friends. As Steve and his family moved farther away and we became involved in our new lives, our letters and visits became rare.

When Billy and I began doing presentations at various conferences, a welcome opportunity arose. We had been invited to The University of Alabama. Since Steve and his family had moved to Tuscaloosa, they planned to meet us at the conference. Billy was so excited and looked forward to a reunion with his best friend. The reunion, however, brought sorrow to Billy and to me. Steve’s mother had warned us that Steve has Alzheimer’s disease, which appears to occur more frequently and at an earlier age in people with Down syndrome than in the general population. Although we knew that Steve’s behavior would be unpredictable, we hoped that he and Billy would retain some degree of their relationship. Billy was devastated when Steve neither recognized nor spoke to us. He could not understand, as none of us can, how a deep relationship can disappear from someone’s mind. Billy sill recalls with sadness, “Steve not know me.”

Steve has improved somewhat, and we still speak by phone from time to time. Billy, however, is still sad about his friend’s inability to relate. Even as we recall their past positive experiences, it always ends with “Steve not know me.”

Like the teacher who observed Billy and Steve, I think of their relationship as the most beautiful friendship I ever saw. Have you had close friendships like this? Have you had experience with Alzheimer’s disease? What would you say to Billy?

It’s About Time

Inspiration 3 Comments »

Nature tells us so much about timing. A few weeks ago I noticed that the Lenten rose was blooming. It always blooms during Lent and it is the first flower (always white) of spring. Now the purple crocuses are blooming, to be followed by the yellow daffodils. This happens every year, and I’m usually magically surprised at the regularity of the whole process. Granted, occasionally a late frost interferes with the development of the blossoms, but the timing is constant.

Ecclesiastes 3:1 tells us that “There is a time for everything, and a season for every activity under heaven.” Our study of the book of Esther reminds us that there is also a time to wait.

We are not good at waiting; our culture trains us for impatience. We change lines at the bank to avoid waiting, we rush from church to beat the crowd at the restaurant, our computers take too long to boot up. But we were also taught as children that “Haste makes waste” and my son the landscaper warns his customers. “If you hurry, you mess up.”

I had a lesson in waiting a few years ago when I was planning a move and had my house for sale. I did all the things you’re supposed to do: find a good realtor, eliminate personal objects and clutter, keep the yard in good shape. Since I was building a house in another city, I felt the urgency of selling quickly. The new house was rapidly emerging, the old house was waiting. So was I, alarmed at the thought of making two house payments. Finally, almost a year later, I dismissed the realtor and put my own ad in the paper. A week later a neighbor phoned to say that her sister was visiting and would like to see my house. She fell in love with it (as I had assumed anyone would) and a few days later made an offer to purchase it. I received a call that the new house would soon be ready for occupancy. I packed up and arranged for a moving van.

The day we closed on the old house, the new house was ready and I moved in. Had it sold any sooner I would have had to rent a house in the new home place and make a second move.

Psalm 27 admonishes us “Wait for the Lord; be strong and take heart and wait for the Lord.” Our time is not always God’s time – a difficult concept for us to accept in our fast moving world. Distinguishing between “When it’s time” and “When it’s time to wait” requires patience and acceptance.

Can you identify?

Live Wires

Community Participation, Inspiration 5 Comments »

You can reach me by phone any Wednesday morning at 10:30 at the following number:1.877.807.9873. You will join eight to ten other people who have tuned in to Live Wires, a conference call sponsored by my church for people who are unable to attend Sunday School.

There are five of us who take turns teaching the international Sunday School lesson of the Methodist church. We phone the members in advance to remind them to make the call. When we are all connected, we chat a little, voice our concerns and joys, and begin the lesson. At first there was little interaction but now, after more than four years, all the members chime in with their relevant thoughts and experiences. We always close with prayer and good wishes for the coming week.

Several weeks ago, during a severe windstorm, I was teaching the lesson and wondered why there were no answers to my questions. After about 15 minutes, I realized that the electricity was off and my phone was not transmitting; I was talking to myself! We laughed about it later, and they told me that they had gone on with the lesson, sharing their thoughts.

Because we deliver the lesson books quarterly, we have visited all the participants in their homes, retirement homes, and nursing homes, and feel as if we are close friends. Several times members have had to leave their homes and move to a facility close to family. Because our phone number is an 800 number, they have been able to keep in touch and bridge the distance. I think this has helped with the transition.

Now we are a family, and that sometimes entails the pain of losing a member. Last week the other teachers and I attended the funeral of one of our most dedicated students. We learned that we were her only connection to the church and were told by her daughter how much we had meant to her in her long illness. We were family.

I think Billy has captured the essence of this mission. On Wednesday morning, he says, “Well, Mom, are you ready for Love Wires?”

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