Wednesday, July 26, 2006

Being Loved by "the Real Church"

The early Christians in the Book of Acts were known for how they cared for each other. You don’t see that as much today with our mobile society and hurry-up world. We often don’t get close enough to each other to know another’s needs or have time to help if we do.

Believer’s Bible Commentary says of the Church in Acts: “In an environment of hate, bitterness, and greed, the disciples manifested love to all. They repaid persecution with kindness, and prayed for their assailants. Their love toward other Christians forced their enemies to exclaim, “See how these Christians love one another!” [1]
In December 2004 we moved to LaPine, Oregon. Only six months after that my son, Billy Ray’s health was in crisis and he ended up in St. Charles Medical Center for 13 days, nine days of which were on the ventilator. Our little church, Grace Fellowship didn’t really know us that well because we had difficulty being in church regularly due to Billy Ray’s health. Nevertheless they became what someone has called “the real church” to us.

During that time one family loaned us an RV trailer so we could stay right on the hospital grounds with Billy Ray. Others were there waiting when I would come out of the ICU to see if there was anything we needed or to pray with me.

Folks in the hospital were asking where that little church that loved us so much was located. It was an incredible support to us as a family but also a testimony of Christian love.

In this day of families who can’t find an accepting church home this story is intended to be an encouragement to others. I will share methods for creating a church home for your complex child and family and more about how churches can be a support for families in coming posts.

Until next time,
Peggy Lou Morgan
Parenting A Complex Special Needs Child Blog
Amazon Blog
Yahoo Group

[1]MacDonald, W., & Farstad, A. 1997, c1995. Believer's Bible Commentary : Old and New Testaments . Thomas Nelson: Nashville

Sunday, July 23, 2006

Here's Billy Ray Singing

I told my Pastor when I started this blog that I wanted to try to capture Billy Ray enjoying the worship music for you. If you have been following my regular blog you know that it has been crazy so I hadn't gotten it done. Pastor Lighthill met us at the door this morning and asked if we still wanted to do the pictures. He handed his camera to Jeff Fields who snapped these pictures.

It is very difficult to catch the essence of Billy Ray's joy in a picture. A former pastor used to say that Billy Ray is the only one who dances in church. He bounces up and down and claps sometimes even to songs not intended to have clapping. He has a true sense of worship but it is in his own way. The second picture shows his expression but doesn't catch his clapping.

Billy Ray's love for music began from being rocked by Mom and Grandma Daisy. We sang Sunday School songs and old hymns to him. Additionally, a then young pastor, named Virgil Askrin was our pastor and led the congregation in lots of little choruses that BR still sings today. If you are reading this on Bend Blogs, you may know Pastor Virgil since he is the Pastor at Bend Nazarene.

Here is another picture of Billy Ray singing taken at Soul's Harbor Nazerene where we attended before moving to LaPine in December 2004.

It is my intention to write a post this week about the ways our little LaPine - Grace Fellowship Church has been like the church in Acts to us. It is a story I want to share as an example of how others can support families in their churches.

Billy Ray has a colonoscopy on Thursday so prayers would be appreciated. He will have to be sedated which is always a concern after last summer's ventilator experience.

A servant in training,
Peggy Lou Morgan
Amazon Blog
Parenting A Complex Special Needs Child Blog
Yahoo Group

Friday, July 14, 2006

What to Say When a Friend's Baby (or Yours) is Born with Special Needs

I was surfing the net today and came accross this speech about the birth of a child with Down's Sydrome. It could really apply to a child experiencing any disability. The author Sandra Assimotos-McElwee gives permission but it is pretty long to quote here. It contains scriptures and lots of insights about how to be support of friends and how to think about a child as a person.

Here is an excerpt:

"After telling four friends of his diagnosis over the phone and in person I really didn’t like their reactions. They were getting upset and apologizing. Their "I’m sorry’s were compelling me to comfort them and tell them "It’s O.K." and I didn’t have the emotional energy at the time to continue to deal with their sadness, when I had a new baby that I loved anyway, no matter what he had and I was worried about because he was in intensive care at the time.

"Then I thought, "well if this had happened to one of my friends what would I have said?" I couldn’t retrieve from my memory files anyplace I had heard the proper response, or even the improper response. So I decided to add a note to my son’s birth announcement telling people how we wanted them to respond. It read:

"Dear Family and Friends,Sean is a very special baby, and the birth announcement can’t possibly say it all. God has made Sean special and chosen us to be his parents...we feel blessed. Sean was born with Down Syndrome. We want to give you time to adjust to the news, so you wouldn’t feel the need to have an immediate response. We hope you will feel the same as we do, we’re happy and proud. We would like you to see him as we do, a beautiful baby boy. We also want you to treat him just like any other baby---Congratulate US. We have a baby, we’re a family now. This is not a sad moment, PLEASE do not apologize, we aren’t sorry. We are still gathering information on Down Syndrome and probably won’t be able to answer any questions for a while. We would like to encourage you to call us, come to see Sean. He sleeps, eats, cries and dirties diapers, just like every other baby, he’s just got an extra chromosome."

It is really worth the time to read it.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Blog and Parenting A Complex Child
Websites: and
Yahoo Group

Tuesday, July 04, 2006

Dr. Charles Stewart's Book Review of Parenting Your Complex Child

This blog is not about selling my book but this review sent to me by Dr. Stewart does have good spiritual insight into special needs children and I wanted to share it with you today:

by Peggy Lou Morgan

This review of Peggy’s book is from the standpoint of a pastor, and as a friend of Peggy and her family. Her world and that of Billy Ray includes that of her church and her faith.

Her story is one of great value to any caregiver, especially to pastors who could read what it is like to live with one such as Billy Ray. What I have to write is from this viewpoint.

Peggy Lou Morgan’s story reminds me of the story of Sisyphus of Greek mythology. Sisyphus was condemned in Hades to roll a stone up a hill until he nearly achieved the peak, only to have the stone roll back again, and the action to be repeated with the same failure forever. One might ask, "Will she never learn that there is no cure for Billy Ray?" This is not a story for those who want a "magic wand" to solve their problems or who wish for a happy ending to every story. Or for those who glibly sing of a silver lining in every dark cloud. However, this is the story of the power of faith, hope and love. Although Peggy never mentions the name of Jesus, it is not because she doesn’t live by His power. Her story reminds me of the story of Esther, the only book in the Bible in which the name of God does not appear, but in which the power of faith in Him shines brightly.

Peggy lays bare her life with Billy Ray and her husband Larry with the utmost candor. It is not a candor that parades itself with a false humility seeking attention to herself nor does she seek victimhood by her vivid descriptions of what she endures in trying to find solutions. In this day when abortion, euthanasia, and incarceration are on the tip of our tongue as solutions to the problems of the sort the Billy Rays of the world pose for us, it is refreshing to see that someone refuses the easy way out. Her perplexity and pain are laid bare, but so is the love that ties her to her son.

The questions that Peggy raises here about the ability of society (that’s us) to deal with the Billy Rays of the world may seem unfair. However, Peggy never descends into the easy criticism that destroys all who failed to help Billy Ray. Her experience with the world of professionals was both good and bad. The good was very good and the bad... well? Who wants to be treated as a "dumb parent"?

Does Peggy expect too much of the world of professionals? She knows that we exalt these people onto the heights of Mt. Olympus. She went to Mt. Olympus many times and found the gods not at home. Then what? With the true insight of a scientist she begins to document every thing. It reminds me of a trend in the world of religion. It is called "journaling." It is taught in colleges and seminaries under the heading of "Spiritual Formation" ( a new phrase for the devotional life). Peggy got a handle on her problems when she began to document what was going on in her life with Billy Ray. This proved helpful when she goes to her doctor.

There is a lesson for living that shines bright in the chapter telling us to "communicate and adapt" (Chapter 9). It reminds me of Rabbi Kushner’s book about "all he learned for life he learned in kindergarten." We are all "telling it like it is" people, but we often fail to adapt, to get over it and get on with life. "Telling it like it is" is description; knowing what to do with the "like it is" is prescription, and she is not short in that respect.

What do you do when the thing that you do to help turns out to be tragic? Peggy details this dilemma on page 72. She blamed herself for giving Billy Ray the medicine that would change his life "dramatically." Wouldn’t it be grand if everything we did to help others turned out well? This is life in the raw. There are no failsafe ways to live and love. Peggy let her failures turn her to her faith. "Crisis has a way of turning us to our personal faith." (p. 73).

Support groups are essential for overcoming the obstacles of life. Peggy is not jousting with mice in her effort to find peace for herself and her home, and especially for finding the way to help Billy Ray. She comes to the place where one must acknowledge what can be changed and what cannot. From this cul-de-sac in life she arises to devise plans, in consultation with others, to help Billy Ray. The importance of formulating plans and goals to make a difference is a start. Carrying them out requires resolution.

Perhaps the central thing about her struggle, and one could say, a turning point, is when she allowed Billy Ray to teach her (Chapter 8) It reminds me of an observation made by Professor Stanley Hauerwas in his book Sanctify Them in the Truth, Holiness Exemplified. In Chapter 8, "Timeless Friends: Living with the Handicapped," Hauerwas writes . "People who really care about the mentally handicapped never run out of things to say, since they do not write ‘about’ the mentally handicapped precisely because they do not view the mentally handicapped as just another ‘subject.’ They write for and in some sense with the mentally handicapped." (p. 144). He goes on to show how our approach to caring for these people "exposes the pretensions of the humanism that shapes the practices of modernity." (145) To give an example of what he is talking about, Hauerwas refers to Michael Berube’s book, Life As We know It: A Father, a Family, and an Exceptional Child, the story of two college professors and their Down’s syndrome child. Hauerwas does not allow the Berubes, who believe in abortion to get off the hook. There is no acceptable future for Jaimie, the handicapped son of the Berubes, in the world of modernity that knows no God. "As Christians," Hauerwas writes, "we should not be embarrassed to discover that the mentally handicapped among us help us better understand the narrative that constitutes the very purpose of our existence." (p. 151). The handicapped expose our own sense of weakness and helplessness (153). Peggy experienced what those who use the methods of "therapies based on mechanistic presumptions...rather than community" experience (p. 152). She, however, had a community of faith, as ignorant as we are at times of ourselves and our weakness, that together, with God, all things seem possible.

Peggy did not write this book to do what I think would be an appropriate use of this narrative. If this book could stimulate a new discussion of the church and its care of the "complex child", it would more than prove its value to the larger community from which it has arisen.

Dr. Charles W. Stewart, D. Min.
Until next time,
Peggy Lou Morgan

Monday, July 03, 2006

Trust and Obey

Last week when our friend and assistant, Dave Peters, was praying for Billy Ray he said the old song "Trust and Obey" kept coming to his mind. I thought about that after he told me and realized that is a lot of what the lighthouse concept is. I often compare it to practicing His presence but it is also about trusting and doing what you feel the Lord is guiding when there are no easy answers.

I love Proverbs 3:5 (New Century Version): "Trust the Lord with all your heart, and don’t depend on your own understanding."

When your complex child is in crisis and you are exhausted a sense of desperation can come so quickly. There are so many things that you don't understand and don't know how to handle. The ability to rely on the understanding of the Lord brings incredible strength. There is release and comfort in being able to say to the Lord "I don't know what to do about this."

Once Billy Ray was refusing to eat or drink and I knew that we were going to have to take him to the hospital if he didn't eat soon. I just said out loud to the Lord "I don't know what else to try" and the strong impression came in my mind strawberry banna yogurt. Fortunately we had some in the refrigerator and I offered it to him. He ate two containers immediately.

We are often told God is our Abba Father (Daddy God) that means He is also Abba Grandfather. I know that seems corny but He loves your complex child more than you are capable of. He knows your child best, after all He created him.

When you trust in the Lord and don't limit yourself to your own understanding you will be amazed at what my friend and encourager, Bud Pugh, calls "God's awesome creavity". Team up with Abba Grandfather and rely on His understanding.

I do want to make it clear that when your instinct (often the guidance of the Lord) is to do something more intensive that the yogurt referenced, you really need to seek the Lord to be sure of understanding. There are many "fads" of treatment for children with special needs and even medications that are risky.

As shared in Parenting Your Complex Child Billy Ray experienced a series of major seizures believed to me caused by a medication that my instinct was reluctant about for two years. It wasn't an experimental drug, the literature said nothing about major side effects but I just felt hesitant. Eventually I acquiesced to assurance from several professionals I trusted that it was a safe drug. There was nothing to substantiate my hesitance. I believe that was the Lord's warning.

Six months after the seizures, the medication began listing seizures as a side effect. What was unknown at the time (like rocks hidden from the old ship's captain) was made known. There was a reason for my instinct.

I know there have been parents who said that God told them to murder their children. I don't believe God would ever tell you do anything that would harm your child. He is a God of love and strength for the day.

Until next time,
Peggy Lou Morgan
Parenting A Complex Special Needs Child Blog
Amazon Blog
Parenting Your Complex Child Yahoo Group

Sunday, July 02, 2006

What is this Blog

Pictures here in taken by Dave Peters on the Oregon Coast.

There will always be storms and rocks along the way parenting our complex special needs children. When I was the most desperate with my son because nothing was working at home or school, I turned to the Lord and he gave me what I have come to call the Lighthouse Concept.

Following Jesus as our lighthouse when we have no idea what to do next for our child brings such comfort and increases our insight.

This blog is not intended to replace my other blog, Parenting A Complex Special Needs Child, it is intended to share the joys, struggles and spiritual adventure of parenting a special needs child together with the Lord.
Until next time,
Peggy Lou Morgan