Another Story of God's Goodness

In my post Being Loved by the Real Church, I shared about the way our little church was there for us when Billy Ray was in the hospital and on the ventilator for nine days. The family who loaned us the RV so I could literally stay at the hospital with Billy Ray have been experiencing their own trauma with 12 year old Josh who had a tumor in his brain. His mother, Lori, has been doing a blog of the experience and Josh has posted some too. Check out Josh's Testimony both as an encouragement to the power of prayer and as a story of being loved by "the real church".

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect and Parenting A Complex Special Needs Child
Websites: Parenting Your Complex Child and Lighthouse Parents
Parenting Your Complex Child Yahoo Group
Club Mom

Upcoming Radio Interviews

I will be doing some radio interviews in various parts of the U.S. as follows:

Wednesday, October 11, 2006 1 p.m. ET WOGR - AM in Charlotte, NC. It will reach other parts of North Carolina too. You can find locate other North Carolina stations by going to Word Net Radio .

Thursday, November 2, 2006 at 9:05 a..m. ET, WBCL-FM which covers parts of Indiana, Michigan and Ohio.
You can check their site for a station near you. They also put archives on their site so you will be able to listen to the interview even if you aren't in that area.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect and Parenting A Complex Special Needs Child
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Club Mom
Yahoo Group

Tired but Rejoicing 9/22/06

There is so much I want to share despite my sleep deprived fragmented mind. I want to write a blog post about our “real church” really being there for us again and it would be so true. I want to write that being prayed up before the crisis really worked during Billy Ray’s surgery and how good the Lord has been which is also really true. I promise to write about all of that soon.

For tonight I just want you to know that the Lord and great doctors came through for Billy Ray again. He did great in the surgery. Dr. Masterangelo was very pleased and under Dr. Raudy’s sedation he woke up soon after getting to the recovery room and was already off the ventilator (my biggest concern).

He was discharged the second day which was much sooner than we thought. Overall doing well except he wants popcorn and hamburgers and things he can’t have. Our challenges are not over but we have crossed a big hurdle in the past few days.

Until next time,
Peggy Lou Morgan
My Other Blogs Amazon Connect and Parenting a Complex Special Needs Child
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Looking to the Lord BEFORE the Meltdown or Crises Come

It seems the Lord has to remind me often how much I need to lean on him not my own understanding. I have been in one of those struggling periods. He has been sending little messages in multiple ways that I need to seek him BEFORE the crisis.

If you read my other blog, you know we are adjusting to our in-home support staff leaving. It is normal for him to refuse to do activities that he normally did with support staff. It takes a while to get him regrouped. I am sure he is also picking up on my anxiety regarding his upcoming surgery on 9/21/06.

As I have gotten busier with Billy Ray and my work, it seemed we were in meltdowns before I got fully in touch with the Lord in the morning. I know that the Lord understands I can’t get on my knees first thing in the morning when BR is marching and that I am not a morning person so coherent conversation with him is more difficult.

Psalm 5:3 (NCV) says: “Lord, every morning you hear my voice. Every morning, I tell you what I need, and I wait for your answer." When I do that it makes such a difference in how our day plays out.

I don’t like rote prayers in general because I see prayer as a specific conversation with my Lord about who He is in our lives and the world, thanking him for what He has done for us and seeking his guidance and protection. However, I wrote one to use in those mornings when I need to get to the Father quickly and I just can’t bring up the words otherwise:

"Good morning Lord, thanks for your protection through the night
Help me to wake up as though I had a full night of sleep,
Instead of being awaken by my restless child and for periodic checks
Fill me with your energy and patience today, I am running on empty

Lord, help me to understand what my child needs today
Help me anticipate stresses that will over stimulate him and catch triggers
Remind me that difficult behavior can mean unmet needs and frustration.
Make me sensitive to what he communicates by behavior not just words.

Don’t let me get so busy taking care of my child today that I forget you.
Remind me that I need your presence for my own being not just my child’s
Stay beside me as I care for him; bring peace in the noise and activity.
Lord, please guide us through this day with your wisdom and insight.

Help me to sift through all the theories and ideas for his care.
And give me the wisdom to know what is right for my child.
Help me to communicate his needs to professionals who try to help.
Lord open the eyes and ears of the professionals to see my child clearly as he is

Let me love him in the same unconditional way that you love us.
Remind me that you have a purpose for his life and mine.
Most importantly be glorified as others see your love in my child.
In all the things we do today may thy will be done."

Before I could get that posted, I got the devotional from Proverbs 31 Woman called Crossroads written by Susanne Scheppmann and it was right on spot with what I have been thinking lately. Susanne tells of taking a wrong turn traveling and seeing a sign “Welcome to California” when she was supposed to be entering Nevada. She compares to our spiritual life as follows:

"My "detour" added an additional two hours to my long drive home. If only I had read my map or asked for directions, I wouldn't have found myself in California. I wouldn't have lost valuable time and energy.Often, I make the same mistake in my spiritual life. Big decisions loom ahead. I think I know the right course. So off I go without taking time to pray or read my Bible, and my choices go awry. Once I have strayed too far down the wrong path, I usually realize: "Oops, I should have sought God's advice."

It is the same with parenting a complex child. We have so many twists and turns in the road that we can’t see coming. The Lord does help us with those decisions when we wait until our son or daughter is on the floor in a public place or refusing to go to an important medical appointment or some other crisis. It is, however, much easier when we have asked for his guidance to understand what a child needs to be comfortable with an event and asked the Lord to calm him.

Until next time,
Peggy Lou Morgan
My Blogs: Amazon Connect and Parenting a Complex Special Needs Child
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Club Mom
Parenting Your Complex Child Yahoo Group

Weariness

I love my EBible software. When I am in Billy Ray’s room waiting for him to go to sleep I often do searches about how I am feeling. The other night I did one for “weary” because I was.

Several comforting scriptures came up in my search but one that surprised me. I never really think of God as becoming weary in fact in Isaiah 40:28 it says that he never faints or grows weary. So when I read Isaiah 43:24b (NKJV) “But you have burdened Me with your sins,You have wearied Me with your iniquities.” It caused me to reflect on it a bit.

In the verses before just before this one, God had been saying that Jacob and Israel failed to call on him. He felt rejected by their failure to maintain closeness. The weariness came out of iniquities that probably wouldn’t have happened if they had stayed in touch with the Father.

I think there are some similarities to our reactions to our children. We do get tired and even weary in attempting to understand and care for our complex children. Like the Father we don’t faint and get so weary we stop caring for them. We continue to love them with the unconditional love of the Father.

Billy Ray demonstrated that love to me in an unexpected way. Mother’s Days had always been hard for me because of my infertility. Billy Ray’s adoption healed that pain. When he was a teenager we were driving home from a very special Mother’s Day service at church. I tried to explain to him that Mother’s Day is special to me because I am his mother and how hard it had been before him. He punched me really hard in the shoulder. I was crushed.

Later I thought about that. Despite his rejection of my sharing I loved him still and understood that he was not able to grasp what I was saying. The Father’s love for us is so strong than even though we fail to turn to Him in crisis or reject His help in multiple instances, He loved us enough to send His own son that we might be saved.

It is comforting to think of the Father being able to understand weariness and our human impatience.

Until next time,
Peggy Lou Morgan
My Other Blogs: Parenting A Complex Special Needs Child and Amazon Connect
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Yahoo Group

Billy Ray and His Choir

As shared before Billy Ray loves worship music. We attended Soul's Harbor Church of the Nazarene until we moved to LaPine at the end of 2004.

It was slow in getting acquainted in that church. Billy Ray can be disruptive in church from time to time. However, the relationship had really gelled by the time we moved six years later.

The relationship with Pastor Ray Jones and his wife, Christine, the minister of music, seemed to be the first to start. I wasn't sure it would actually work the first time Billy Ray took off for Christine. She, being the eloquent lady that she is was a bit startled by this teenager coming at her and grabbing her. However, the relationship became and thing of beauty and grew to involve the whole choir. Each Sunday before service "my choir" prayed for Billy Ray and that he would enjoy the service.

Lover of music that he is Billy Ray did not like to have special musicians come. He wanted his "Christy-dean" and "my choir". Christene was later to call him her biggest fan. During a time that he was really ill and we weren't in church much he would say "I want my Christy-dean sing to me". Pastor Ray had a CD that Christene had made and sent it to Billy Ray. We play it so many times it wore out and Pastor Ray had to make another one.

This picture was taken on our last Sunday there, December 19, 2004, which was Billy Ray's 22nd birthday.

Until next time,
Peggy Lou Morgan
Blogs: Parenting A Complex Special Needs Child and Amazon Blog
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Yahoo Group

Gentle Reminders in Time of Trouble

If you are the parent of a child with special needs chances are good you have been through times when it seemed there were just no answers for your child. We are there AGAIN. There are health issues though we have a medical team who works very hard. The in-home support staff left a little over a week ago and we are back to trying to do it all ourselves.

The Lord gave me the Lighthouse Concept a long time ago yet when we go through survival with our kids it is easy to lose focus at least temporarily. He has a way of reminding me where the best help can be found.

One of those reminders came a few days ago. Billy Ray has been sick with severe sinus and ear infections plus the abdominal problems the medical professionals have been trying to resolve for over a year now. With him being ill and not having support staff I have not been in the Word and having quality time with the Lord as I like to.

In desperation, I went to the Lord and just acknowledged that I didn’t know how to help my son. While thumbing through the Bible to the passage I was looking for my eyes caught John 8:12 a verse I love “***I am the light of the world. Whoever follows me will never walk in darkness but will have the light of life.”

The Psalmist cried out “But, Lord, don’t be far away. You are my strength; hurry to help me.” (Psalms 22:19 NCV) The Lord is never far away but when we get in survival mode with our children’s problems sometimes we take our eyes off Him. The Light (wisdom, insight) is there waiting to help us if we turn the connection toward Him.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Blog and Parenting a Complex Child
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Yahoo Group

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
www.lighthouseparents.com
Parenting A Complex Special Needs Child Blog
www.parentingyourcomplexchild.com
Amazon Blog
Yahoo Group


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

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
www.lighthouseparents.com
www.parentingyourcomplexchild.com
Yahoo Group

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 http://leeworks.net/DDS/speech.html 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: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Yahoo Group

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:

A REVIEW OF
PARENTING YOUR COMPLEX CHILD
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

www.lighthouseparents.com

www.parentingyourcomplexchild.com

Yahoo Group

Parenting A Complex Special Needs Child Blog

Amazon Blog

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
www.lighthouseparents.com
www.parentingyourcomplexchild.com
Parenting A Complex Special Needs Child Blog
Amazon Blog
Parenting Your Complex Child Yahoo Group

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

www.lighthouseparents.com

www.parentingyourcomplexchild.com
Amazon Blog
Parenting Your Complex Child Yahoo Group