Compassion Revolution Archives 2011
HomeWork With Your Own HandsMind Your Own BusinessWalk ProperlyArchives

eosnavg13.gif

  • Introduction to Compassion Revolution by Marsha Norris
  • Compassion Revolution  by Marsha Norris
  • Somebody's Mother (poem) by Mary Dow Brine
  • Lilly's Journey by Marsha Norris
  • A Gift of a Lifetime by Marsha Norris
  • Dancing With Max, Compassion for the Autistic by Marsha Norris
  • What is Autism? by Marsha Norris
  • Update on Lilly, July 1, 2011 by Marsha Norris
  • How Would You React to This Woman? by Pat Gates
  • A Friend and Comfort to Me (poem) -unknown
  • Suffering, Jesus Cried Loudly by Gary Henry
  • "Please don't use the word retarded" Response to email
  • Living with a family member with intellectual and developmental disabilities, by Marsha Norris
  • Dancing with Max: Compassion for the Autistic by Marsha Norris
  • What is Autism? by Marsha Norris
  • Are You a Susie? -author unknown
  • Living with Lilly by Tabitha (Lilly's big sister)
  • Compassion Mends a Broken World by Marsha Norris

Introduction to Compassion Revolution        by Marsha Norris

I'm the grandmother of seven blessings! (Pictured here with the first six.) The last blessing was born November 16, 2010. Blessing number five, Lilly, is the catalyst for my column: "Compassion Revolution." Lilly, born July 4 and an Independence baby in manyways, has a condition called Trisomy 18 (Edwards Syndrome), a chromosomal defect.  It occurs in about 1 out of every 3000 live births.  Fifty percent of babies with this defect who are carried to term are stillborn, and less than 10 percent survive to their first birthday. (Learn more at (http://www.trisomy18.org/)

The medical profession typically views these children as "throw aways," and many are denied the same medical care that more normal infants/children receive. Before we knew Lilly was Trisomy 18, we did know (via ultrasound) she had a large hole in her heart that would need repair after birth. The cardiologist who performed the ultrasound agreed to do the surgery....that was untiltests confirmed that Lilly was Trisomy 18. And then no surgeon we contacted in the Raleigh, North Carolina area would give this child the care she needed. Why? Their reasoning: "Trisomy 18 babies are incompatible with life, therefore why prolong their lives?" (Excuse me! Aren't we ALL incompatible with life?)

But the Lord is faithful. Thousands of saints across the world were praying that a doctor be found who would help Lilly, and the Great Physician answered our prayers. Wolfson's Children Hospital in Jacksonville, Florida viewed Lilly as a human being who was just as entitled to a chance at life as any other child. And through their great compassion they have extended hope and treatment to this innocent life. Though as of this writing she is still awaiting open-heart surgery (she ideally should be 10 pounds to have this surgery), Wolfson did intervene with treatment that has already saved Lilly's life once. Lilly's journey will be chronicled in an upcoming "Compassion Revolution" article, but for now I invite you to visit http://pray4lilly.blogspot.com to learn of her specific prayer needs.

The medical profession, I soon realized, was not the only entity lacking compassion. I found a "compassion shortage" rampant amongst Christians as well. As I began to talk with others struggling with crisis/difficulties in their lives, it became apparent that we Christians are just plain lousy at putting on the heart of compassion that Jesus modeled for us. While we might think we are compassionate folks, when we begin unraveling and understanding that Christlike compassion (meaning "to suffer with") always leads to acts of mercy (not just sympathetic thoughts), we see just how much we fall short.

So please come along on this revolution, and let us stimulate/provoke each other to love and good works. Let us be the change we wish to see.

Be blessed....and go and be a blessing,
Marsha

eoslapis_bar2.gif

Compassion Revolution

Marsha Norris

You are invited to join me in a revolution. Not the kind with guns and swords that takes captives, rather one that revolutionizes the heart. This revolution will not be easy. It will take us places we would rather not go. It will make us feel things we would rather not feel. It will cause us to do things that might make us uncomfortable, nervous, and perhaps afraid.  Because to be part of this revolution, we must step out of our comfort zones – not just once or twice, but over and over and over again. 

I am speaking of a revolution that will change how we think and behave towards the suffering, alienated, and lonely. A revolution that will redefine our perception of what compassion is.  A revolution that will elevate it from the passive concept defined by our culture, to the proactive biblical concept exemplified by Jesus Christ. The kind of compassion that always leads to acts of mercy toward others.

Though we may think of ourselves as compassionate people, I dare say few of us fully comprehend –  much less practice –  biblical compassion as we should. And when we do, most likely we "cherry pick" when and to whom we extend mercy-producing compassion. Let's face it, we're a busy, self-focused, self-serving, pleasure-seeking people with long to-do lists that leave us with little time left over to be the Good Samaritan.   

In Compassion: A Reflection on Christian Life, authors Henri J. M. Nouwen, Donald P. McNeill, and Douglas A. Morrison write:

"The word compassion is derived from the Latin words pati and cum, which together mean 'to suffer with.' Compassion asks us to go where it hurts; enter into places of pain; and share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human. When we look at compassion this way, it becomes clear that something more is involved than a general kindness or tenderheartedness. It is not surprising that compassion, understood as suffering with, often evokes in us a deep resistance and even protest.....It is important for us to acknowledge this resistance and to recognize that suffering is not something we desire or to which we are attracted. On the contrary, it is something to avoid at all cost. Therefore, compassion is not among our natural responses. We are pain-avoiders ...."

Have we truly suffered with anyone recently? Or gone where it is painful? Have we recently shared in the brokenness of another or in his or her fear, confusion, or anguish? When was the last time we literally cried out with those in misery, mourned with those who are lonely, or wept with those in tears? Have we been weak with the weak, vulnerable with the vulnerable, or powerless with the powerless? I venture to say most of us are not scoring too well right now and fall pitifully short of possessing a heart of compassion like Christ modeled. Yet we are to become like Him in all ways. 

The abundant need for compassion and the lack of it has surfaced continually in my life over the past year. Not only has my own family been in crisis, but close friends have suffered – and continue to suffer – heartbreaking circumstances. What I have experienced/witnessed is this: we Christians are failing miserably in "putting on hearts of compassion." Meaning, Christlike compassion that always leads to acts of mercy. 

So, then, why is it we tend to be the uncompassionate (meaning we choose not to suffer with the suffering) wretches that we are? And how can we begin to drastically change the way we feel and behave towards those who are suffering so they may see Christ living in us? These are issues we hope to explore in future articles.

Do you have any thoughts/insights/experiences on this topic you would like to share? If so, please email me at mqnorris@aol.com. All feedback used in upcoming articles will be kept anonymous unless you give me permission to print your name.

Pray, let us all unite in this revolution of the heart: "We must become the change we want to see."-- Mahatma Gandhi

eoslapis_bar2.gif

SOMEBODY'S MOTHER 

The woman was old and ragged and gray
And bent with the chill of the Winter's day.

The street was wet with a recent snow
And the woman's feet were aged and slow.

She stood at the crossing and waited long,
Alone, uncared for, amid the throng

Of human beings who passed her by
Nor heeded the glance of her anxious eye.

Down the street with laughter and shout,
Glad in the freedom of 'school let out,"

Came the boys like a flock of sheep,
Hailing the snow piled white and deep.

Past the woman so old and gray
Hastened the children on their way.

Nor offered a helping hand to her-
So meek, so tired, afraid to stir

Lest the carriage wheels or the horses' feet
Should crowd her down in the slippery street.

At last came one of the merry troop,
The gayest laddie of all the group;

He paused beside her and whispered low,
'I'll help you cross, if you wish to go."

Her aged hand on his strong young arm
She placed, and so, without hurt or harm,

He guided the trembling feet along,
Proud that his own were firm and strong.

Then back again to his friends he went,
His young heart happy and well content.

'She's somebody's mother, boys, you know,
For all she's aged and poor and slow,

'And I hope some fellow will lend a hand
To help my mother, you understand,

'If ever she's poor and old and gray,
When her own dear boy is far away.'

And "somebody's mother" bowed low her head
In her home that night, and the prayer she said

Was, 'God be kind to the noble boy,
Who is somebody's son, and pride and joy!"

 
-Mary Dow Brine

eoslapis_bar2.gif

. 

Lilly's Journey... 

by Marsha Norris 


 

Announcing the arrival of Lillian Eva Hollowell!

Born July 4. Weight 5 lbs. 4 oz. Length 18 inches.

Your browser may not support display of this image.

Our little Lilly decided she didn't like the idea of being induced today so she came on her own at about 5:20 this morning. Labor was quick - only about an hour and a half total. (We made it to the hospital with about 20 minutes to spare.) Lilly was born naturally even though a breech baby. 

No one knew what to expect because of the Trisomy 18. Her heart slowed after birth and she lay very still for about an hour. But then she started crying and really came to life! She's very alert and turns her head towards noises. She hasn't even slept a lot. She has surpassed all expectations. And because of our special circumstances, we were allowed to leave the hospital shortly before noon. 

Thank you everyone for your prayers - we are in awe of how God answered them. And please do continue to remember little Lilly in your prayers, as we don't know what her future is. But for now we are treasuring every moment with her. 

Blessings,

Lisa & Frank  


Your browser may not support display of this image.Against great odds, my granddaughter Lillian Eva Hollowell was born July 4, 2010 at 5:20 am. You see, earlier in my daughter's pregnancy, Lilly had been diagnosed with Trisomy 18 (also known as Edwards syndrome); a chromosomal defect in which a person has a third copy of genetic material from chromosome 18 instead of the usual two copies. Fifty percent of Trisomy 18 babies carried to term are stillborn and less than ten percent survive their first birthday. So it was through the fervent prayers of thousands across the country that Lilly "Grace" (my nickname for her) entered this world. 

Many Trisomy 18 babies are not able to breathe or eat on their own. We are thankful that Lilly can do both. Many are afflicted with damaged organs, especially the kidneys, and a hole in their heart. Though ultrasounds have revealed Lilly does have a large hole in her heart that will require surgery, we are not aware so far if any other organs are affected.  

"Rejoice with those who rejoice, weep with those who weep" -- Romans 12:15  

I don't think I've ever been more acutely aware of this scripture than since learning of Lilly’s diagnosis. Many times I felt I spent most of my day wiping mascara off my cheeks (is there really such as thing as "waterproof" mascara?) and emotions would overtake me at the most unexpected moments (still do). There were days when I, not so graciously, reminded God of Mark 11:24 and Luke 18:1-8 (engrave these verses on your heart–they are part of a prayer warrior's weapons). But God took me through a range of emotions to a place of peace through His promises and through friends who prayed with me, cried with me, called me, hugged me (never underestimate the power of a hug!), sent me cards of encouragement, and even fasted for Lilly. No doubt one of the lessons God has been teaching me is what godly friendships look like. I pray I will do a better job in the future of being a friend who "sticketh closer than a brother" and is always ready to lift up those whose daily burdens need an encouraging or steadying hand.  

Saturday, July 10th, I had planned a "Thanksgiving-in-July" family dinner to celebrate Lilly's birth. My older son and his wife drove over from Virginia Beach to join us and to meet Lilly. Around 3:30 that afternoon, my son-in-law called to tell me Lilly was not doing well.  During the past hour she had stopped breathing four times and turned blue. This was not the way I had planned things! This was to be a day of celebration and joy! Instead, I was reminded of the fragility and uncertainty of Lilly's life and the need to immediately seek the Great Physician's grace, mercy and healing. SOS prayer requests were sent out all over the country. And by that evening, Lilly's episodes had stopped. Sunday she seemed her usual self. 

Trisomy 18 babies are typically considered "incompatible with life" by the medical community and not entitled to the same medical care that a "normal" baby would have. Lisa and Frank were told upfront that fetal monitoring would not be provided during labor even though they requested Lilly be treated as a normal baby. Lilly did not cry right after she was born nor move much. The doctor who delivered her simply laid her on Lisa’s stomach and walked away. The attending midwife told my daughter, “We might not have her with us very long.” But Lisa kept rubbing Lilly’s little back and after about an hour she started crying and moving around. I don’t think the doctor who did the delivery ever returned to check on Lilly...and she was dismissed from the hospital about 6 hours after she was born. She was Trisomy 18--therefore different hospital “guidelines” were in place. 

We knew before Lilly's birth (and before the amniocentesis confirmed she had Trisomy 18) that she had a hole in her heart that would need to be patched. The cardiologist who performed the prenatal ultrasound on Lilly's heart agreed to do the needed surgery...until he learned she was Trisomy 18. Then he refused, as did the other cardiac surgeons in the Raleigh Triangle area. So we were left with an innocent baby, created in the image of God, who would die without surgery. She was in massive heart failure, struggling to breathe, suffering physically, and losing weight. 

Thousands of saints around the world were following Lilly's blog and praying for her; praying specifically that we could find a compassionate surgeon willing to operate on Lilly.  And the Lord did indeed provide just that…enter Wolfson's Children Hospital in Jacksonville, Florida. Thanks to my sister, who became Lilly's advocate for finding a surgeon, Wolfson's learned of Lilly's case and agreed to evaluate her and possibly do the surgery. Their biggest concern was that she was frail and continuing to lose weight. Already well under 5 pounds and still losing, they knew she needed to "beef up" to increase her chances of having successful surgery. 

So in mid-September of 2010, my daughter and her husband packed up Lilly, sister Tabitha, and brother Hunter and headed for Florida. I flew down several days later. A blessing in all of this was that my sister lives in Jacksonville, so we had a place to stay while Lilly was in the hospital.  

Lilly was admitted to the hospital on September 15. One of her attending nurses later told me that Lilly was close to death at that time. In addition to her frailty and continuing weight loss, she had an infection, low electrolytes, fluid on her lungs, and was struggling to breathe. After two weeks and only a slight weight gain, the doctors decided to tube feed her through her nose so she would not have to use her precious energy (which burned calories) to suck. They also decided she was not yet a good candidate for surgery but would instead perform a procedure to help her grow stronger so that in a few months she could return and have the open heart surgery. Lilly was put to sleep and a band was inserted around her pulmonary artery to help reduce the fluid in her lungs and to ease her breathing (which also meant conserving calories).  One of the biggest concerns was that after the surgery Lilly would not be able to come off the ventilator and breathe on her own. But, true to her nickname, "little firecracker," she did amazingly well and had no complications. The doctors were pleased with how well she did and I’ve heard she’s become quite a legend at Wolfson's among the surgeons and other medical staff, including the ethics committee. 

Three weeks and one day after being admitted, Lilly was released from the hospital with an A+ on her "report card" (thank you prayer warriors!). She will remain on tube feeding for now to conserve her energy and help her gain weight. Her mom has become quite the expert at inserting and cleaning her feeding tube and at last check her weight was up to 8 pounds and 7 ounces!!!

So for now we are back in North Carolina awaiting her return to Wolfson's for the actual open-heart surgery. That will be determined by either her gaining the ideal weight (around 10 pounds) or the artery band becoming too tight due to her growth. 

Many lessons have been learned, or reinforced, throughout Lilly's short 7-month life: 

  • Prayer moves the hand that moves the world. Last January, I began a ladies' Bible study using The Daily Bible in Chronological Order.  One of our assignments was to record each time God changed His mind/will due to the prayers of His people. Now please understand, though God's will is always done, there were times when He changed His will from "will A" to "will B." Usually in response to prayer. (We counted at least 17 occasions.) I have no doubt this was the case with Lilly. Her story has been far too extraordinary for her to have done so well without God's intervening in response to prayers.
 
  • God is using Lilly to reach out to others who are suffering. On my flight to Jacksonville, I overheard the young woman sitting next to me discussing with her traveling friend the Trisomy 18 baby she had recently given birth to and lost. Boldy I grabbed the young woman's arm, "Did you say you had a Trisomy 18 baby?" Startled, the young woman replied, "Yes, in January. She only lived 21 days." "I am so sorry," I replied, “your grief must still be raw.” I told her about Lilly and how I was on my way to the hospital that had agreed to help her. The young woman began sharing with me her own experiences, and the pain of how at a recent family reunion nobody acknowledged the child she had given birth to and lost. "When people ask me how many children I have, I always say ‘I have three children. Two who are living.’" She and I discussed the "crossing to the other side of the street" many people do when it comes to acknowledging the suffering of others and extending compassion. This young woman shared that some days she is unable to get off the sofa and still attends support groups for parents who have lost their children. By the end of our flight, she had asked me for Lilly's blogspot so that she could follow her journey.
 
  • Helping others through shared information. While at my sister's, she received a call from a friend whose friend's daughter had just found out she was carrying a Trisomy 18 baby. The young woman, finding no support from her doctor, was quite devastated. She was able to talk with my daughter and then connect with doctors at Wolfson’s. And though the same pediatrician who cared for Lilly agreed to care for this mother's child, we recently learned the baby died before birth.  
 
  • Many have told us how Lilly's journey has helped them better put into perspective the challenges they face, and in some cases realize how insignificant those challenges are.
 
  • God is using Lilly to reach out to the unsaved. Lisa and Frank's faith in the Lord has been recognized by those reading Lilly's blog, including those who have not put on Christ. Lisa always includes scripture in her blog updates. Some are responding to those scriptures and seeking the Lord.
 
  • God is using Lilly to strengthen relationships. Many have told us how Lilly has changed their lives by making them more aware of how precious life is, how precious family and friends are, and how petty they have been by dwelling on themselves.
 
  • God is using Lilly to teach compassion.  I have been blessed to be on the receiving end of compassion from people I hardly know. Through uplifting and encouraging emails, cards, and hugs, the Lord has sent me strength. (I also learned that in times of crisis, those whom you thought were your closest friends can abandon you. “Fair weather friends” will be separated from “friends who love at all times.”) In turn, I have become more aware of following up with others who are dealing with suffering, pain, or other adverse circumstances in their lives. We Christians have much to learn about compassion. It means getting out of our comfort zones and coming along side that person in need. Compassionate friends are rare.  Perhaps because compassion is not just a feeling, it's an action.
 
  • God's power and sovereignty are being demonstrated through Lilly's Trisomy 18.  God often works through others to accomplish His agenda and to show His glory. He has taken a physically frail and handicapped infant who has the spirit of a fighter and united thousands around the world to lift her up in prayer. So already during Lilly's short life she has created unity in God's kingdom.
 
  •   Focus on the Family is using Lilly to give hope to others.
  • Through their booklet, “A Gift of a Lifetime,” Focus on the Family is reaching out to parents who find out their baby is not expected to survive birth. Lilly's name was suggested by the "Now I Lay Me Down to Sleep" photographer who took her picture after she was born (and several times since). This booklet also offers suggestions for family members, friends, etc. on how to be supportive in these situations. You can see the booklet at:  http://www.heartlink.org/pdf/giftofalifetime.pdf  Lilly is featured on page 8. 

Saturday morning, January 29, 2011

My daughter called to tell me Lilly was having trouble breathing and they were on their way to the emergency room. Strange that the night before I thought I had wrapped up this article, yet something told me “not yet.” So I delayed sending it in. Now this already lengthy account of Lilly’s journey grows longer.  

After learning of Lilly’s situation, I immediately began sending out prayer requests. When I arrived at the hospital around noon I found Lilly’s dad praying over her as the rest of the family huddled close. I was stunned to see how pale and weak my little grandbaby was as she lay struggling to breathe in her mother’s arms. “This is it,” I thought, “God is calling her home.” Gathering up Tabitha and Hunter to take them home with me, I told Lilly I loved her as the attendants readied her to be transported to another hospital. 

Throughout the day the prayers of the saints grew in number and the sweetness of their aroma increased as they steadily rose to petition our heavenly Father. And by evening Lilly’s color had returned, she was more responsive and even cooing softly. The Lord was answering the prayers of His people. Following is the posting from Lilly’s blogspot Saturday night, her first night in the hospital. 

Saturday, January 29, 2011


Hospital details

Written by Lilly's mom, Lisa: My husband and I are at the hospital with Lilly right now. I'm very tired and today was a bit of a blur but I want to write down basically what happened before I forget anything. 
 
I woke up this morning about 4:30 and thought that Lilly's breathing sounded a bit weird. Sort of gasping in some parts and I could hear some clicking. I picked her up and it stopped. When it started again I took her downstairs and boiled water and we sat under a blanket with it. The steam seemed to help some but I thought she still didn't sound right and her coloring didn't look right. 
 
I called her pediatrician and we went to the closest hospital. They put Lilly on oxygen and that helped quickly. The doctor was asking me about her and seemed stuck on the fact that she is almost 7 months old and has Trisomy 18. He finally asked if anyone had told us the prognosis of the disorder. How fun to blow the mind of medical people. A chest x-ray revealed a lot of fluid on the heart and lungs, and that her heart was enlarged. We were told Lilly was dying. (I am very grateful to Dr. and Mrs. S. for coming to the hospital and praying for Lilly with me.) Lilly was given a dose of Lasix. 
 
It was decided that Lilly needed to be transferred to another hospital that had a pediatric intensive care unit. So Lilly and I got to ride in an ambulance. (I suppose it would have been more exciting had it be under better circumstances.) A group of doctors and nurses quickly assessed her and she was made comfortable in the little bed. 
 
Lilly had an echocardiogram to check her heart. It verified the enlarged heart and lots of fluid on it. The doctor said that they didn't know why her heart suddenly has started failing like this. (Doesn't sound like it's caused by the VSD.) But that they would do another chest x-ray and echo in the morning to see if the medicines are helping get that fluid off the heart. If not, she said we would have "a different conversation." I asked if she had the VSD surgery quickly if that would help. The doctor said that she would not survive the surgery right now. The anesthesia would kill her. 
 
I hate this. I'm just not ready to lose Lilly. But I admit that I don't think I ever will be. I just want so badly for her to beat all those odds and live to be one year old. (Of course I know I'll want her to live longer than that once we get there.) Please God - let her live to your glory! 
 
"But you, LORD, do not be far from me, You are my strength; come quickly to help me." - Psalm 22:19 
 
On a good note, Lilly looks fantastic compared to what she did this morning. (She looked ghastly then.) Her color is back in her cheeks, her eyes are opened wide, and she's making occasional little sounds. She doesn't have any socks on to kick off, so she's being "sneaky Lilly" and kicking off the blanket. She's able to track my voice with her eyes if I move away from her. We so badly want to hold her but she has this enormous oxygen contraption wrapped around her head. 
 
We had a strange and amazing thing happen at the first hospital. Not related to Lilly but to our son. One of the doctors who worked on Lilly became extremely touched when he saw my husband bring our son and older daughter into the room. He asked me hold old my son was and said he had one the same age. He complimented my son’s manners. I noticed he was watching him when he interacted with me and Lilly a little. Then he came into the room and handed my husband a big wad of cash. He said something like "I was going to go out and do something I shouldn't after work today. But instead I'm going home to my son. When you came in with the baby it didn't really hit me until your son came in. Please take the money." Wow. God really can punctuate the bad with beautiful things! 
 
"For He has not despised or scorned the suffering of the afflicted one; He has not hidden His face from him but has listened to his cry for help." - Psalm 22:24 
 
Please please be praying the tests tomorrow will show the fluid has greatly gone down. 
 
"Dear Lord please hear the prayers of your people and answer us."
 


Monday, January 31, 2011

My daughter says, “Lilly is doing well enough and the doctors are going to try and take her off the t-ppap (oxygen mask) and switch to one where she has to work a little harder. The goal is to wean her back off so she can, Lord willing, go home again. Her temperature is fluctuating between 99-102 this morning. Milk is being increased and she is happy with food. Lilly is very calm and relaxed this morning and is sleeping in my lap.” 

The doctors feel the underlying cause for Lilly’s illness is a virus. Since Lilly’s heart is not normal, she is more apt to react severely to infections, which are the major cause of death in Trisomy 18 babies. Although the fluid seems to be decreasing in her heart and lungs, her heart is more enlarged than usual and the left side is not pumping as effectively has it has been.  

We are thankful that this time around the medical community was compassionate toward this Trisomy 18 baby. The were also surprised she had already lived 7 months.  

Since I cannot leave you with an “all is well” right now, Lilly’s blogspot is updated regularly so please follow my daughter’s postings. 

“The fervent prayer of a righteous man avails much.”—James 5:15 

Please lift this little one up to the Great Physician and pray she will fully recovery from this infection, that she will regain her strength and will soon be able to have the open-heart surgery without any complications.  

Please pray for her parent's strength, discernment, and peace – as well as that of her devoted 9-year-old sister Tabitha. Please petition the Great Physician to continue showing His amazing glory through Lilly Eva Hollowell, and for her story to continue to touch and change the lives of others.   

 

"I will praise Thee, for I am fearfully and wonderfully made." –Psalm 139:14 

http://pray4lilly.blogspot.com 

Be blessed…and go and be a blessing!

marsha 

UPDATE 2/8/11 Lilly came home from the hospital this past weekend. I won't be able to give updates until I publish again but you can go to Lilly's blog (mentioned above) and keep tabs on Lilly's progress. -Pat

eoslapis_bar2.gif

Through their booklet, “A Gift of a Lifetime,” Focus on the Family is reaching out to parents who find out their baby is not expected to survive birth. Lilly's name was suggested by the "Now I Lay Me Down to Sleep" photographer who took her picture after she was born (and several times since). This booklet also offers suggestions for family members, friends, etc. on how to be supportive in these situations. You can see the booklet at: http://www.heartlink.org/pdf/giftofalifetime.pdf  Lilly is featured on page 8.

The following is taken from this booklet:

A Word to Family and Friends

Perhaps someone you know and love is facing the impending death of their baby. Naturally, you want to be very sensitive to their pain. Families often feel isolated and abandoned after receiving a terminal prenatal diagnosis. They may feel awkward trying to explain their baby’s condition and therefore pull away in an effort to protect their emotions.  

As a family member or close friend, you may feel equally uncomfortable. You are afraid you will say the wrong thing or create an awkward silence. These situations can sometimes cause you to also retreat, but don’t. Your loved ones need you. They want to know that you care about them and their baby.  

Simple ways to show you care:

•  Acknowledge their baby and call him or her by name 

•  Be supportive of the family. Accept their decisions without expressing judgment 

•  Prepare a meal 

•  Offer to run errands or clean the house 

•  Offer child care so Mom and Dad can have a night out 

•  Ask if you can help coordinate the efforts of others wishing to help                                                                         

•  Remember to listen, be gentle and be available when needed 

•  Tell them that you are praying for them and think of them often

eoslapis_bar2.gif

Hello Marsha,
I like the topic you have chosen--"Compassion Revolution." I agree with the premise that there is a need to discuss the subject of compassion and increase awareness on it's importance. Excellent article. Shirley

Horizontal Divider 19

Compassion comes in many forms and, yes, we all need to be compassionate . . . and in larger doses than we are. The way our society has developed to this point in time is not very conducive to learning compassion. In our age I think society would like to eliminate the word "compassion" from our lexicon . . . it seems to be the "me generation" in so many instances. This is not to say all people are uncompassionate, but so many are that should not be. Children need to see their parents doing things for others and they will learn to be compassionate towards as they mature. As a caregiver for years to two elderly ladies,I have lived in the throes of compassion day in and day out and yes, it is draining but it is also a continual learning experience and can be so fulfilling.  We DO need to open our hearts so much more fully to those who sorely need "a little compassion".  Believe me, this is the ultimate of "a little goes a long way".

Horizontal Divider 19

Your article is so very well done. It needs to be read by everyone that is a servant of God. I would change nothing! Having said that, I feel compelled to add this word of caution; that we also have to take great care that we do not become judgmental. (Something I have had to struggle with.)We can never know everything that is going on in another person's life. Our love for our brother has to be greater than our need for their compassion. We can survive without it, and we must not cause anyone to stumble. The greatest commandment is to love our neighbor as ourselves. The above comments do not in any way take away from your plea that "WE MUST become the change we want to see." There is, indeed a great need for us to see ourselves as we really are, including our resistance to allow ourselves to suffer with and for others. -Margaret Head

Horizontal Divider 19

You know, we Christians must constantly ask ourselves, “Who are we?” I think a lot of these problems stem from a sort of identity crisis. I have had the privilege of being around many  that understand that our faith is more about who we are than “what we do”. The things we do come out of who we are. I really appreciate you starting this site and this work. It is desperately needed! Thank you for being a prophetic voice!! We must yield to the Spirit so that we can be who we are made to be, individually and corporately. Then and only then can we be the body of Christ on this earth. 

Horizontal Divider 19

A person is more than a diagnosis.  A person HAS diabetes; they ARE NOT literally "a real bad diabetic."  A person has an illness or challenge, but it does not define them.  It's a subtle difference, but making the effort to think and speak in this way, is more respectful of the person.  Would you prefer to be called "a quad," or _(Name)_, who has quadriplegia? I think people don't intend harm, but for a patient or parent to overhear such comments can be hurtful.  It influences how a person thinks of self inside one's own mind.  A condition is something I have, not who or what I am. It is not my identity. On the other hand, over time, certain terms come in and go out of fashion.  There was a time then the term retardation was in vogue.  Then it become developmental delay.  So, we  need not wear our hearts on our sleeves and take offence quickly, where none was intended.  -Susan RN

eoslapis_bar2.gif
My-Despair-Poster-C12180059.jpg

How would you react to this woman?

  • Would you be afraid and stand there aloof?
  • Would you feel a little agitated and silently think she lacks faith?
  • Would you feel the need to make her stop and proceed to admonish her to have more faith and trust?
  • Would you feel embarrassed to be around her?
  • Would you roll your eyes and think, 'nothing is THAT bad'?
  • Would you feel sorry for her and try to calm her down in order to stop her outward display of grief?
  • Would you feel her pain and either remain still or hug her, allowing her freely to express her anguish without embarrassment, interruption, and judgment?
  • Would you be willing to pray with her and for her?

I appreciate the article Marsha placed on this page, written by Gary Henry, concerning the emotional suffering of our Savior.  How did we come so far from the example of our Lord that we feel the need to stop displays of anguish, erroneously believing they are causing more pain to the individual, not to mention embarrassing to those around? How did we get to the point where we misjudge these outburst of grief as proof of a lack of faith and trust in our Lord? Far be it from us to ever try and prevent such suffering to be expressed!

From my own personal experience, I can tell you that those who have not allowed me to outwardly express my grief have prevented an opportunity to gain my full confidence that we can have a deep friendship based on trust and I will hesitate to share my feelings again. This isn't an act of vengeance or anger on my part, it is a protection against further pain. On the other hand, a complete stranger can make a deep impact on me if they have given me an opportunity to freely release thoughts and emotions.  The following poem describes how comforting and helpful we can be to one who needs to share inner grief and pain.  -Pat Gates

A Friend and Comfort to Me

Tonight I met a new friend
As kind and caring as one can be
There was a special way about her
She became a comfort to me

I haven't the words to describe her
I guess unique and understanding is she
But I do know that in a brief moment
She became a comfort to me

I've no idea where this friendship will go
Or if it has already come to an end
I only know that in my heart
You will always be my friend

Always remember how very special you are
How you make the world a better place to be
At least you did for me that night
You became a comfort to me

It doesn't matter if I ever see you again
For it's in my heart your memory runs free
When I need to I can stop and think of you
And once again you're a comfort to me

author unknown

.

.
.
Suffering, Jesus Cried Loudly
Gary Henry – WordPoints.com

"Now from the sixth hour until the ninth hour there was darkness over all the land. And about the ninth hour Jesus cried out with a loud voice, saying, ‘Eli, Eli, lama sabachthani?' that is, ‘My God, My God, why have You forsaken Me?'" (Matthew 27:45,46).

OUR CONCEPT OF INNER "STRENGTH" IS SUCH THAT WE ARE SOMETIMES RELUCTANT TO REVEAL THAT WE ARE HURTING. We hide our heartaches from everyone else, lest they think we are weak or that we have "the wrong attitude." And sometimes even within our own selves, we are reluctant to be honest about these things.

But if we think that strong people never experience anguish, that is a false notion of strength. Just as courage doesn't mean the absence of fear, strength doesn't mean the absence of pain. Strength is not inconsistent with anguish of spirit, nor does strength mean that we have to try to keep our heartaches a secret.

Jesus' example is instructive here. By any spiritual or emotional measure, Jesus was the strongest person who ever lived. Yet He was "a Man of sorrows and acquainted with grief" (Isaiah 53:3). Jesus' strength didn't keep Him from hurting, and it didn't keep Him from EXPRESSING His hurts. We are told that He "offered up prayers and supplications, with vehement cries and tears to Him who was able to save Him from death" (Hebrews 5:7).

When we cry out in pain, however, the difficulty is to do it with the same HUMILITY and REVERENCE that Jesus did. Agony and emptiness have a tendency to make us selfish and demanding. But those are temptations we can resist, and when we resist them, our cries of agony can be pure and sincere . . . and acceptable to God.

Anguish is simply an indication of unmet needs. When we hurt emotionally, it means that there is something we deeply need that we don't have, either because we never had it or because we had it and lost it. In heaven there will be no unmet needs, but on earth there are plenty of them. We were made for a different kind of world than the broken one that now exists, and as long as we live here, even as Christians, we will have needs that are achingly unfulfilled. As long as we cry humbly and reverently, it is not wrong to cry honestly and deeply, "How long, O Lord, how long?"

"If I ever wonder about the appropriate ‘spiritual' response to pain and suffering, I can note how Jesus responded to his own with fear and trembling, with loud cries and tears" (Philip Yancey).

I recently spoke with a friend who is going through a heart-wrenching journey. She shared with me her anguish and her need for comfort as she seeks to cope with difficulties (brought on through no fault of her own) that she now has to deal with daily. Though she is strong in faith, her heartache at times is nearly unbearable.  But she has learned that many do not want to "suffer with her" as she makes this journey. They, in fact, avoid her. "I need to talk," she says. "I need people to listen. But I can tell real quick that most are only comfortable with my keeping a ‘stiff-upper' lip and stuffing my feelings, my needs. No wonder Christians sometimes have to look outside the church when they are seeking to deal with the tough issues of life."
.
Comfort-Zone Christianity 
.
How often do we hide behind our "masks"? So afraid to let others see the real us? The imperfect, struggling, hurting, lonely, broken, and needy us? Perhaps because of pride? Our maybe because in the past when we did take off our masks and reveal our true selves, we received judgement, ridicule and blame. We quickly saw how uncomfortable folks were with the real us; they preferred our masks and our false smiles.

Or perhaps we are the uncompassionate ones. Willing to judge and condemn but unwilling to come along side and lift up the sufferer, to share in his or her pain. We are pain avoiders, not wanting to get too close to someone else's pain or let it touch us.  "Comfort-zone Christianity" is the preferred Christianity. Yet...isn't that a contradiction? How can Christianity ever be comfortable? 

If we are insensitive, see others hurting and look the other way, we are saying we care more about our own wants than the needs of others (Philippians 2:3-4). Therefore we know nothing about compassion. Compassion exists only when we are moved to take action.

Be blessed...and go and be a blessing! Be the change you want to see!

Marsha

eoslapis_bar2.gif

FROM THE MAIL: Please don't use the word "retarded" on your website.   Though I know you don't mean it as such, it's a hurtful word that demeans individuals with disabilities.  Please see this link for a fuller discussion:

http://www.disabilityisnatural.com/images/PDF/pfl09.pdf

RESPONSE FROM PAT: I did some research and what was former the American Association of Mental Retardation is now American Association on Intellectual and Developmental Disabilities (AAIDD). Instead of "retarded" the correct term is intellectual and developmental disabilities. The link sited above said to use the term "cognitive disability (diagnosis)" instead of "mentally retarded." I had no idea the name had been changed and I appreciate the update on this. I can understand the change due to the word "retarded" being thrown around as a put down word,  not only by children, but adults as well.  From the beginning this wasn't so as the term mental retardation was used to replace some very harsh words. It will take time for change as most people still use the term mentally retarded and mean no harm by it.

Now I have a sincere question. What term do we use to talk about living with what we refer to as mental retardation? If we just say an intellectual or developmental disability or challenge that is such a huge term that could include many many different disabilities. If we use the medical term of Down's Syndrome that is putting all of those with intellectual disabilities (again what use to be called mental retardation) into one group when there are various forms of "mental retardation."

Marsha is writing a series of articles in regards to a request from a reader asking, "How does a family deal with feelings of isolation when they have a family member who is retarded or disabled?" We want to specifically speak about those who are "mentally retarded," so what term is proper to use instead of "intellectually challenged?" If we say we shouldn't isolate this group of people from others who are intellectually challenged then how can we discuss particular situations that arise with this particular disability? A person who had a stroke can be intellectually challenged so what term do we distinguish the two? This is a sincere question as we want to use the correct term but also want to be sure others know what and who we are speaking about.

Please respond to ourhopeonline@gmail.com with an answer to this question.

There is a point I'm going to disagree with from the site mentioned above. Well, let's not say I necessarily disagree, it's just that I don't have a problem with using the word, disabled, and will continue to do so, in regards to any type of disability. The site says we can use the word disability but not disabled and should say, "She has a disability," rather than "She's disabled." Their point is it takes the labeling off an individual and sees the person first and then what the person has to deal with (a disability). I can understand this as I, myself, defend those with disabilities to be seen as individuals (not illness) with the same needs and the desires as all of us. However, while I have disabilities myself (mental, emotional, and physical) from Chronic Fatigue Immune Deficiency Syndrome, I don't mind saying, "I'm disabled, " or "partially disabled." I believe whether or not to use the term, disabled, is an individual choice and it probably depends on what the person is experiencing in his/her own life. As an example, those of us with CFIDS often don't get recognized as having true disabilities because we look "normal" and we have to fight for recognition of these disabilities, but there are others who have visible disabilities who want to be seen as capable in many areas and not be judged as totally disabled.

In all things, let's give one another respect, seeing each other as individuals with a heart, mind, and soul, and being patient with others who may not have the same experiences.

Thank you for your help,  Pat Gates

Living with a family member with intellectual and developmental disabilities 

Marsha Norris

Helen Keller on being disabled… 

Self-pity is our worst enemy; and if we yield to it, we can never do anything good in the world. 

Everything has its wonders, even darkness and silence, and I learn whatever state I am in, there in to be content.” 

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. 

Although the world is full of suffering, it is full also of the overcoming of it. 

When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us. 
 

Helen Keller (1880 - 1968) was an American author, activist and lecturer. She was the first deaf/blind person to graduate from college. She was not born blind and deaf; it was not until nineteen months of age that she came down with an illness described by doctors as "an acute congestion of the stomach and the brain," which could have possibly been scarlet fever or meningitis. The illness did not last for a particularly long time, but it left her deaf and blind. Keller went on to become a world-famous speaker and author. She is remembered as an advocate for people with disabilities amid numerous other causes. Read more at http://www.disabled-world.com/artman/publish/famous-deaf.shtml#ixzz1KGb4EEoG 

As a teenager, Joni Eareckson Tada loved life. She enjoyed riding horses and loved to swim. One summer in 1967, however, that all changed. While swimming with some friends, Joni dove into a lake not knowing how shallow it really was. She broke her neck, paralyzing her body from the neck down. For the next two years, during her rehabilitation, Joni struggled. She struggled with life, she struggled with God, and she struggled with her paralysis. Since then, Joni has written fourteen books – including her autobiography, Joni, recorded several musical albums, is actively involved as an advocate for disabled people, and has become an international mouth artist, sketching beautiful pictures. Her autobiography was also made into a feature film (titled Joni), in which she stars. You can read more about her journey and how her relationship with God helped her learn to accept her disability at http://www.joniearecksontadastory.com/  

Dr. Samuel Johnson (1709 - 1784) is one of England's best known literary figures, an essayist, biographer, lexicographer and a critic of English Literature. He was also a great wit and prose stylist, well known for his aphorisms. Johnson had poor eyesight, was hard of hearing and had a scarred face as a result of childhood scrofula. He also had a number of tics and other involuntary movements, the symptoms that suggest Johnson had Tourette syndrome and obsessive-compulsive disorder. Read more: http://www.disabled-world.com/artman/publish/tourettes-famous.shtml#ixzz1KCoTE0c4 

Albert Einstein provided the theory of relativity and was awarded the Nobel Prize in Physics for the work he did with photoelectric effect.  Characteristics, which may indicate that Einstein may have had Aspergers Syndrome:  Einstein could not speak fluently at the age of nine (Botham, 2006, p. 16), language delays are common in children with high functioning autism.  His parents suspected that he might actually be mentally retarded (Botham, 2006, p. 16). Often, children with Autism are labeled Mentally Retarded or Behaviorally Disordered.  At the ceremony of induction as an American, Einstein attended without socks (Botham, 2006, p. 16).  Children and adults with autism and Asperger's Syndrome often have peculiar habits, extreme sensitivity to textures (Attwood, 2006, p. 3), and are often rated "high" on scales measuring atypicality, demonstrating odd behaviors, and seemingly lost in their own little world (Fattig, 2007).    Frequently, children with Asperger's struggle with finding socks that "feel right" or with a line at the toe that doesn't not bother them.

Although there is a lot of speculation as to whether or not Einstein did have Aspergers, he certainly had many of it’s characteristics. Read more at http://www.disabled-world.com/artman/publish/article_2086.shtml 
 
Theodore Roosevelt, 26th President of the U.S. Roosevelt (1858 - 1919), was a soldier, historian, explorer, naturalist, author, and Governor of New York later becoming the President of the United States at the age of 42 years old. He was well known for having a vast range of objectives and achievements, all with an energetic determination and a hard ''cowboy'' persona. He was subject to epileptic seizures, his eyesight was bad, and he also suffered from asthma, but was still a man of courage and strength appreciated by many. Read more at
http://www.disabled-world.com/artman/publish/epilepsy-famous.shtml 

These are but a few examples of disabled people who have risen above their challenges. It is encouraging and inspiring to know that being disabled does not necessarily mean one is incompatible with having a meaningful life or unable to make a valuable contribution to others.  

Disabilities come in many forms. I recently read a quote that said, “We are all disabled/handicapped in some way.” Amen! It may be a physical disability, a mental disability or an emotional disability. It can also be a strength or talent we have taken to an extreme. For example, we may have the natural gift of leadership but if left untempered, we could end up steam rolling others to make sure we get our way. Whatever our own personal disability (perhaps lacking relationship skills, extreme shyness, or personality quirks), we need to give the same grace and compassion to others for their disability as we would like given to us. 

In the next few issues, we will explore intellectual and developmental disabilities (formally called mental retardation) not only from the aspect of living with someone who has them, but also from the perspective of those with intellectual and developmental disabilities and how we can help them be and do their best and move from darkness into a brighter place. We will also examine why we tend to be uncomfortable around those who are disabled physically or mentally (would love your input and thoughts on this), and specific ways to relieve the isolation of families who have a member who is disabled or intellectually challenged and extend compassion, hope, and love. As always, we welcome and invite your input to our articles, especially if you are living this challenge in your life. We also welcome inspiring stories you might wish to share about those who have overcome their handicap challenges. 

Susan Boyle, the awkward and unattractive woman with the magnificent singing voice who took the world by storm, writes, “I was slightly brain damaged at birth, and I want people like me to see that they shouldn't let a disability get in the way. I want to raise awareness - I want to turn my disability into ability. Watch her incredible debut at http://www.youtube.com/watch?v=RxPZh4AnWyk&feature=player_embedded 

I encourage those of you living with a disabled person to take time to read inspiring stories about those who have succeeded despite disabilities and to share them with your family. In closing, I wanted to share with you the story of a young man named Patrick Henry Hughes, a pianist and marching band trumpet player who has been blind and severely crippled from birth. Patrick is an amazing inspiration of positive attitude. When he is asked about his disabilities, he replies, “Not disabilities at all – more Abilities.” Please go to

http://www.youtube.com/watch?v=-qTiYA1WiY8 

Let’s focus on the possible rather than the impossible. “For with God all things are possible!” – Matthew 19:26. 

Be blessed…and go and be a blessing!

Marsha Norris

eoslapis_bar2.gif

Dancing with Max: Compassion for the Autistic

Marsha Norris 

“Max doesn’t communicate like we do. But he communicates better than we do about the most important things. Max doesn’t think like we do. But his actions reflect deep spiritual truths.” -- Dancing with Max.

My experience with autism is limited to a young man named David (not his real name) who is now in his early 20s. I have known him for about 15 years, though mainly from seeing him at services. David is extremely well mannered and well groomed. His life dream is to be a chef, and he has recently finished a program in Goldsboro, North Carolina that is taking him one step closer to reaching his dream. Trying to find employment since graduating from high school has been challenging. Though during the interview process perspective employers have been promising in hiring David, they have not come through. Undoubtedly, autism IS a handicap.

During a recent sermon “A Bruised Reed He Will Not Break,” my son, Patrick, spoke of Max Colson, the now 19-year-old autistic grandson of Chuck Colson, author, speaker and radio commentator. Patrick shared with us an article, “The 65,000 Question,” Colson had written that appeared in Christianity Today. (http:///www.christianitytoday.com/ct/2005/october/28.48.html)

The article discusses the cost-benefit analysis of caring for autistic children in regard to their value to society – as the world sees their value, that is. Colson refers to atheist Peter Singer, the Princeton ethicist who argues that the governing philosophy for a society ought to be creating the maximum happiness for pleasure for the greatest number of creatures (a view known as utilitarianism). Singer advocates infanticide for children born with defects: “All I say about severely disabled babies is that when life is so miserable that it’s not worth living, then it is permissible to give it a lethal injection....Why limit the killing to the womb?...Infanticide ... should not be ruled out any more than abortion.” And frighteningly, Singer has been described by The New Yorker, as the most influential philosopher alive!

“Without a view of God,” Colson writes, “or at the very least a transcendent natural order, there is no intrinsic significance to life…. Max’s autism is not a good thing—it’s part of the world’s brokenness. Yet that brokenness has been used to enlarge my capacity to love. That’s a very great gift. Paradoxically, Max has introduced joy into the lives of his teachers, his mother, his grandparents, and many others.... How should Max account for himself, and why should he have to? Max is more than happy to be alive, thank you very much. Max knows a joy and wonder that puts me to shame. Why is that?

“Let me just suggest at this point it’s because the good life is not about the sum total of what we contribute to this world. It’s about loving. Utilitarianism knows nothing of love. Love is the beginning and the end of the good life, however, and it’s in love that our lives must be centered.”

Emily Colson, mother of Max, writes of her journey to bring light and healing into the darkness of Max’s world. In Dancing with Max, one of the most inspiring books I’ve read, Emily takes us into their private world and shares with us her struggles, her challenges, her strength, her determination, her devotion and unwavering love as she advocates for her child. When unable to reach her child through spoken words, she draws word pictures to teach him concepts. Through her drawings she has phenomenal success in helping Max understand events from his past that frightened him and to interpret their significance. Through these drawings he is able to ask his mom what these events were about and whether he needs to be afraid of them any longer. The two draw together in tears, celebrating the new freedom it has brought into Max’s life.

Tirelessly Emily researches schools and specialists to find the best fit for Max. And when one autism specialists tells her to “lock Max in a closet” when he has temper outbursts, she orders the doctor out of her house. When the school Max is attending insists he needs to be sent to a boot-camp school or be in violation of the law, she prepares to move to another state. Even though a single mom (Max’s dad left when Max was very young), Emily continually rallies to fight for Max the fight he cannot fight for himself.

In the epilogue to Dancing with Max, Chuck Colson speaks of how Max and Emily have taught him true compassion:

“I always thought I was caring for others. When I was in the White House, every Christmas I went into the basement telephone center to hand out chocolates and thank the switchboard operators who were so helpful during the year. But now I question my motives. Did I do it so that I could say I was the only White House assistant who did? Just as in all these years of ministry visiting prisoners, loving the unlovable, embracing dying AIDS victims, counseling angry, hurting people, I was doing what I knew God called me to do. But was I caring because people expected me to do this? Or was my heart truly broken for them? Once, on a Habitat for Humanity project in Chicago with former president Jimmy Carter, we were housed in a dreadful tenement. I found myself awake for hours, with sirens piercing the night air. I couldn’t wait for it to be over, because I knew I could then get back to my own bed and clean sheets. I was convicted then that I really wasn’t able to share in their sufferings, really see life through their eyes. Max and Emily have taught me a lot about caring with compassion, though I still have a long way to go.

“Max truly sees the world more as God intended – he’s not judgmental or impressed by looks, status, or finances. He doesn’t try to ‘fit in’. He never boasts…. Max puts on no pretensions, and there is not malice, deceit, hypocrisy, envy, or slander, as the Scripture tells us to avoid. Max is simply incapable of pretending to like someone to get something from them. He loves the things he loves just because he loves them, not because someone else thinks he ought to.”

Some people with autism have uncanny musical or artistic abilities, or the ability to have joyous communion with God, undistracted from the world’s temptation. In the movie Rain Man, Dustin Hoffman’s character could do elaborate calculation in his head. Max has the ability to memorize.

Chuck says, “The understanding of what love really is, and how God uses adversity to bring us to this point, is the great lesson that Emily and our whole family have learned through these experiences. Real love is refined through pain and suffering, which is why one friend, when she learned of Max’s autism, said to me, ‘Oh, you have found favor from God, because He has given you this special-needs child so you can experience sacrificial love’.

“And we’ve come to understand one of the most profound truths of Christianity: the object of our faith is to love.”

You can read more about Max and Emily at www.emilycolson.com.

(Note: If you would like to listen to the online sermon “A Bruised Reed He Will Not Break,” a beautiful tribute to the disabled of this world, please go to:

http://www.fvchurch.org/audio/2011.03.13.A_Bruised_Reed_He_Will_Not_Break.mp3

Patrick says a significant portion of his lesson was inspired by a sermon he heard by a preacher named Mike Holly.)

Often our reservation about engaging with the handicapped, such as the autistic, stems from not understanding their journey. We avoid or limit our exposure to them due to our fears about how they will act, or how we will react, when and if we do reach out to them or they reach out to us. While we see them as “broken,” according to the world’s standards, we fail to see that we also are “broken,” according to God’s standards.

Our family recently had a “taste” of this when an atheist posted a negative blog on my grandbaby Lilly’s blog spot (http://pray4lilly.blogspot.com). The atheist, among other harsh things, wrote that we had “condemned Lilly to life.” Though at first we felt like we had been punched in the gut, we later saw the blessing of being able to reaffirm our faith in our responses and to pray for “anonymous” – the only name given. I commend my daughter’s reply (some of which was taken from the Colson article I referenced above) and especially appreciated my granddaughter Tabitha’s reply. If you would like to read the posting by anonymous and the many excellent responses, please go to Lilly’s blog spot and scroll down to June 20. And by all means, please do pray for anonymous.

Be blessed…and go and be a blessing!

Marsha

eoslapis_bar2.gif

What is Autism?

Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, the rare condition called Rett syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that three to six children out of every 1,000 will have ASD. Males are four times more likely to have ASD than females.

What are some common signs of autism?

“The hallmark feature of ASD is impaired social interaction. A child’s primary care givers are usually the first to notice signs of ASD. As early as infancy, a baby with ASD may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time. A child with ASD may appear to develop normally and then withdraw and become indifferent to social engagement.

“Children with ASD may fail to respond to their names and often avoid eye contact with other people. They have difficulty interpreting what others are thinking or feeling because they can’t understand social cues, such as tone of voice or facial expressions, and don’t watch other people’s faces for clues about appropriate behavior. They lack empathy.

“Many children with ASD engage in repetitive movements such as rocking and twirling, or in self-abusive behavior such as biting or head-banging. They also tend to start speaking later than other children and may refer to themselves by name instead of “I” or “me.” Children with ASD don’t know how to play interactively with other children. Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking.

How is autism diagnosed?

ASD varies widely in severity and symptoms and may go unrecognized, especially in mildly affected children or when it is masked by more debilitating handicaps. Very early indicators that require evaluation by an expert include:

  • no babbling or pointing by age 1
  • no single words by 16 months or two-word phrases by age 2
  • no response to name
  • loss of language or social skills
  • poor eye contact
  • excessive lining up of toys or objects
  • no smiling or social responsiveness.

Later indicators include:

  • impaired ability to make friends with peers
  • impaired ability to initiate or sustain a conversation with others
  • absence or impairment of imaginative and social play
  • stereotyped, repetitive, or unusual use of language
  • restricted patterns of interest that are abnormal in intensity or focus
  • preoccupation with certain objects or subjects
  • inflexible adherence to specific routines or rituals.

Source:

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

eoslapis_bar2.gif

 .
Update on Lilly
.

Posted July 4 on her blogspot (http://pray4lilly.blogspot.com)

Monday, July 4, 2011

Happy 1st Birthday, Little Firecracker! And Happy 4th of July!

Your browser may not support display of this image. 


Weight check = 12 lbs. !!!!!!!!

Happy happy birthday Lilly! Our Little Firecracker is 1-year-old today! In the Trisomy 18 world this is huge. Only 10 % of these babies make it to their first birthday. I've been thanking God for Lilly surviving since I first opened my eyes and looked at her this morning.

If you'd like to see pictures of Lilly on this day last year, see my post about my labor and delivery:

http://pray4lilly.blogspot.com/2011/03/flashback-labor-delivery-and-first-week.html

Lilly has been celebrating all weekend. Today we are going to celebrate her life with her grandparents in a hospital. (Her Pop who had the stroke this past winter.) Praise the Lord Lilly will only be a visitor in the hospital. (And an "undercover" one at that! She goes in and out completely covered up in my wrap.)

“I will praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." - Psalm 139:14

(Lilly’s beloved Pop passed away Monday, July 18. He was a godly man and left a rich spiritual heritage to all who knew him.)



NOTE: At Lilly’s last cardiologist check up, her left ventricle had shrunken some and her heart was the strongest it has been. Doctors are again considering open-heart surgery and repairing the large hole in her heart. Please pray for the best decisions to be made and visit her blogspot often for updates.

eoslapis_bar2.gif

Are You a Susie?

A wonderful illustration of compassion: to suffer with…
(Source unknown)

Come with me to a third-grade classroom..... There is a nine-year-old kid sitting at his desk and all of a sudden, there is a puddle between his feet and the front of his pants are wet. He thinks his heart is going to stop because he cannot possibly imagine how this has happened. It's never happened before, and he knows that when the boys find out he will never hear the end of it. When the girls find out, they'll never speak to him again as long as he lives.
The boy believes his heart is going to stop; he puts his head down and prays this prayer, “Dear God, this is an emergency! I need help now! Five minutes from now I'm dead meat.”

He looks up from his prayer and here comes the teacher with a look in her eyes that says he has been discovered.

As the teacher is walking toward him, a class mate named Susie is carrying a goldfish bowl that is filled with water. Susie trips in front of the teacher and inexplicably dumps the bowl of water in the boy's lap.

The boy pretends to be angry, but all the while is saying to himself, “Thank you, Lord! Thank you, Lord!”

Now all of a sudden, instead of being the object of ridicule, the boy is the object of sympathy. The teacher rushes him downstairs and gives him gym shorts to put on while his pants dry out. All the other children are on their hands and knees cleaning up around his desk. The sympathy is wonderful. But as life would have it, the ridicule that should have been his has been transferred to someone else - Susie.

She tries to help, but they tell her to get out. “You've done enough, you klutz!”

Finally, at the end of the day, as they are waiting for the bus, the boy walks over to Susie and whispers, "You did that on purpose, didn't you?" Susie whispers back, "I wet my pants once too."

May God help us see the opportunities that are always around us to do good.

Living with Lilly

By Tabitha (Lilly's big sister)

(Written February 2011)


Every morning when I wake up I think, "Thank you God for another day with dear little Lilly!"

But then the day after Lilly was born, I decided that all our lives are fragile as her life is. God is so merciful and kind to spare us. Another thing the day after Lilly was born was that I would sit perfectly still holding her for hours thinking, "If God is going to take her home today, I will want to have spent plenty of time with her."

But then I realized that God could do what He wanted with her, taking her any time He pleased, and, of course, for His own glory! Now I rest my hope fully on Him. The day she had problems (a few days after her birth) and turned blue, Mamma and I dressed her in different lacy dresses, and, Mamma made a little gift tag that said, "On loan from God" and took pictures of her in the different clothes. We thought it would be our last pictures of our dear little Lilly.

But she is truly our little survivor! She also survived a recent attack of massive heart failure! She is true to her nickname, "Little Firecracker".

She is now a very happy little girl, and loves to interact with anyone who will take time to talk and play with her! She also has become very good at smiling and cooing! She is getting a tooth - her first one!

My favorite time is early in the morning at 6:30 when I take Lilly from Mamma and play with her until breakfast! I learned how to feed her through a dropper!

God has spared little Lilly this far, and He will to the end.

--------------------

(Tabitha, who turned 10 in June, is devoted to Lilly and involved in her daily care. When I am sitting with the girls, I often have to ask Tabitha about the proper procedures, etc. for Lilly’s care. mn)

 

,

Compassion Mends a Broken World 

Marsha Norris

For those of you who have followed Baby Lilly’s journey (you can read more in the Compassion Revolution archives section of Our Hope), you may remember the cardiologist who did an ultrasound on my daughter before Lilly’s birth. At that time, Lilly had not been diagnosed with Trisomy 18 and the doctor assured my daughter that he could repair the large hole in Lilly’s heart after she was born. Once he learned Lilly had Trisomy 18, however, he said he would not do the surgery. Trisomy 18 babies are considered incompatible with life by some of the medical professionals and not entitled to the same care as other children.

Well it seems Lilly got her justice, so to speak, recently when she was hospitalized for a heart cath. The following is from a recent blog posting:

"The cardiologist making the rounds this morning was Dr. C, the doctor I saw when I was pregnant with Lilly. He was the cardiologist that assured us, after both pre-natal heart ultrasounds on Lilly, that fixing her VSD would be easy enough. He had a plan for treatment. However, once I finally had an amnio done that confirmed Lilly had Trisomy 18, that was the end of our relationship with Dr. C. In spite of this being a huge, well-known and respected hospital, they don't fix the hearts of babies with Trisomy 18. (They believe it to be "unethical" to put someone through heart surgery if they have a short life expectancy.) So anyway, when I saw Dr. C in the hallway, I felt a mix of emotions. I told my husband I hoped he came in and saw Lilly.

"And he did shortly after that. He actually recognized us and I reminded him that he saw us when I was pregnant with Lilly. He quickly glanced at her sleeping in the bed and exclaimed "THIS is the outcome?" I said "YES! She is 14 months old." His face registered a flash of surprise then he quickly finished speaking to us. I was satisfied to hear he knew we are having to go out of state for Lilly's heart surgery. Then he was gone. As my husband put it, Dr. C takes a very ‘clinical approach.' I just hope that he thinks A LOT about Lilly today and that there are some Trisomy 18 children that do live quite awhile!"

Yes, we live in a broken world that’s desperately in need of a compassion revolution. Let’s face it, we are a busy, self-focused, stiff-necked people looking out for number one. Much of our day is spent in tunnel vision pursing what we want to do, when we want to do it. While there are hurting folks around us aching for a hug, a smile, or an uplifting word, we often scurry own our way too intent with our own agenda to even notice. Shame on us!

While we can’t change the world, we can change ourselves. Let’s look around at our neighbors, our church families, our physical families, the check-out clerk at the grocery, the grumpy or cold medical professional. Let us seek out those souls who are hungry for compassion and reach out to them. Get out your church directory and send cards to those struggling with challenges. Take a meal to someone who is sick or who just needs her/his day brightened. Invite someone to dinner who typically is not included. Do you have any widows? If so, go visit them and take flowers or a pie. The opportunities are endless and the change must begin with each of us.

Be blessed…and go and be a blessing!

Marsha

(Baby Lilly Update)

Lilly is scheduled for open-heart surgery on November 3. We request prayers that she stay well until then, and that the surgery go well, with no complications. Thank you!


 

For updates on Lilly and her current prayer needs, go to http://pray4lilly.blogspot.com

 

Photo credit: Steve Rubin Photography

Post Script by Marsha:

Lilly’s life has been an incredible journey. I’ve watched with amazement and gratitude the effect Lilly’s life has made on others; the unwavering faith and strength of my daughter and son-in-law; and God’s abounding loving kindness as He graciously spared Lilly’s life for 17 months, all so she could perfect His perfect will for her life.

I have watched my 10-year-old granddaughter Tabitha step forth with a maturity and strength far beyond her years. A maturity and strength that many adults lack. Especially as she held her little sister’s body and rocked and kissed her shortly after she died. And again, when she helped her mama dress Lilly and fix her hair for the viewing. This family has handled Lilly’s death as a continuation of her life. I applaud my daughter for not shielding Lilly’s lifeless body from her siblings in an effort to protect them. Instead they have celebrated the end of Lilly’s earthly life as the beginning of her heavenly life. The ultimate purpose we are each created for.

So many lessons spring forth from Lilly’s life: a child afflicted with Trisomy 18, in her afflictions, she was able to glorify God. Praise God her mama saw the opportunities to share God’s glory with others throughout the world through Lilly’s blogspot. So many lives of people, some whom we will never meet face to face in this world, irreversibly altered by a little girl who could not walk or talk, yet whom God blessed with the spirit of a fighter and a crooked grin that lit up her big eyes.

My prayer is to not miss any lesson the Lord was teaching me in Lilly’s life…nor in her death, for that matter. Dear little granddaughter, you fought a good fight and now your reward is a home in heaven. You no longer have Trisomy 18, but can leap and dance and walk and sing with all the others who welcomed you there. And best of all…you are safe in the arms of Jesus

Can’t wait to see you again!