Special Needs Moms Like Me

Zoe: A Mother's Good Night Story

2010-06-29T21:48:00.000-07:00

In Her Dreams by Suzanne Perryman (SPECIALNEEDSMOM.COM)

Zoe calls me during the night, and I go to her- sometimes she needs milk, or is tangled in the confusion of blankets she likes to cuddle , sometime it is more than that. But when I tuck her in again, her head atop her Barbie pillow with one arm tucked underneath, I wonder about her dreams. She tells me sometimes about about the monsters and the princesses that visit in her little girl dreams. But as I watch her now, eyes closed, the even breathing of sweet sleep beginning, so content. I wonder what she dreams. ... O in the middle of the night, is often frightened - as if the anxiety she battles by day is exaggerated with the dark of night. I understand this, instinctively. When I find myself up in the middle of the night, soothing her fears, getting a snack for her, I worry too.. about the future, their future, how much I have to do, how much I can't get done, I worry about the rising cost of healthcare, the marketing jobs on my to -do list, the appointments I need to make, even the laundry that sits unfinished. When I have tucked them in again, I crawl back under my covers. I seek the warmth of my husband and try to relax,saying a prayer for my girls. But as I start to fall off to sleep, I still can't help but wonder about Zoe when she dreams. Does she walk in her dreams? Can she run? Dance? Bike ? Can she wear dress up high heeled Cinderella shoes and dance about in play? Does she dream of those things she so often asks to do? I hope so. I hope her dreams carry her into her own magical world, so that if only in her slumber, all her dreams come true.

DNR Order Issued for Disabled Child Without Permission of Parents

2010-06-14T08:20:00.000-07:00

Dad stages protest in Glens Falls over DNR order issued on his disabled son without his permission

June 14, 7:33

Jack Frost prostesting DNR order issued for his son without his input or permission

Glens Falls, NY--Rain did not stop Jack Frost and his friends from holding a brief protest on Saturday, June 12, 2010, in front of the office of Glens Falls Pediatric Consultants.

Frost has spent months trying to get the attention of politicians, school officials, state officials and the media concerning an issue he believes is very important to all parents--the issuing of DNR (Do Not Resusciate) orders on disabled children without the consent of both parents.

A DNR order was issued on Frost's disabled child, without his input or permission. Frost has been fighting to have the DNR revoked.

Jack Frost and friends protesting in Glens Falls

According to Frost, New York State Public Health Law section 2977 sets forth a process for ordering a nonhospital DNR

"consent to a nonhospital order not to resuscitate shall be governed by section 2967 [Decision-making on behalf of a minor patient]..." Section 2967 requires consent of the legal guardian/parent and consent of the minor unless the physician determines that the child is unable to provide consent. Also, "Where the attending physician has reason to believe that there is another parent or a non-custodial parent who has not been informed of a decision to issue an order not to resuscitate the minor, the attending physician, or someone acting on behalf of the attending physician, shall make reasonable efforts to determine if the uninformed parent or non-custodial parent has maintained substantial and continuous contact with the minor and, if so, shall make diligent efforts to notify that parent or non-custodial parent of the decision prior to issuing the order." Public Health Law Section 2967 (2)(b)."

"(c) If the attending physician has actual notice of the opposition of a parent or non-custodial parent to consent by another parent to an order not to resuscitate a minor, the physician shall submit the matter
to the dispute mediation system and such order shall not be issued or shall be revoked in accordance with the provisions of subdivision three of section twenty-nine hundred seventy-two of this article."

Fathers who love being dads joined Jack in the protest

In spite of multiple emails to and conversations with his child's school, pediatrician's office and other people, Frost has been unable to get the DNR lifted. Frost even went to the Wilton Mall to discuss the situation with Senator Roy McDonald back in December when McDonald set up there to listen to constituents' concerns. Frost maintains that a DNR in his son's case is totally unnecessary as his son has only been hospitalized once. While his son is wheelchair bound he is "cognitively fine, very bright and has a good sense of humor."

Diane Coleman, JD, President of Not Dead Yet, based in Rochester, wrote a letter to Senator Roy McDonald on behalf of Frost, drawing attention to the dangers of DNRs, especially on children.

In her letter, she said,

"Children with disabilities deserve the equal protection of the law, and equal access to the same
health care treatments that non-disabled children have a right to expect. "

"One documented problem with DNRs is that health care providers over-interpret them, broadening their meaning beyond CPR to the extent that they deny other health care treatments."

"New research suggests that some doctors may too-broadly interpret the "do-not-resuscitate" (DNR) orders that some patients choose near the end of their lives. . . .For the study, the researchers surveyed 241 physicians . . . overall they would try fewer therapies when there was a DNR order. "Physicians are less likely to agree to initiate procedures ranging from complex therapies, such as intensive care unit transfer, to simpler interventions, such as blood transfusions,“ write Beach and Morrison. The report can be found in the Journal of the American Geriatrics Society 2002:50."

"Coleman stated also, "Children have tremendous capacity to recover from adverse medical conditions and, with or without disabilities, enjoy life, "playing the cards we are dealt," as the saying goes. My parents were told that I would die by the age of twelve due to my neuromuscular disability, but here I am at age 56, still working full time."

Because he has received little response from politicians, school officials or his children's pediatrician, Frost decided to take to the street last Saturday to bring attention to his plight and the plight of his son. He was joined by several friends who staged a brief protest in front of Glens Falls Pediatric Associates in spite of the rain.

For more info: Read more articles by Dan Weaver on parental rights, family court, child custody, child protective services and similar topics.

A Chance For Bliss: Special Needs Persons Helping Special Needs Animals

2010-06-02T13:55:00.000-07:00

Have you see the recent story on A Chance for Bliss,? It is a unique animal sanctuary , a home for senior, special need pets, and for those with end of of life issues. It is run by David and Deanna Bartley in Penryn, Calif. This wonderful couple not only helps animals of all kinds in need, but also brings people with special needs in to help with the animals.

Whether animals provide a service or just their companionship, pets are a great help and comfort to a person with special needs. Petting a dog has been shown to lower blood pressure. Bringing a pet to a nursing home cheers everyone's moods and helps resdents engage in more social interactions. The Bartley's have taken this a step further at A Chance For Bliss; they understand that persons with special needs can also be a great help and comfort to their animals in need.

Pet therapy, therapeutic horse riding, and hippotherapy utilize relationships between people and animals to improve people's mental and physical health. Through the animal-human bond, animals offer us unconditional love and companionship. The Bartley's recognize that special needs persons can provide the same kind of acceptance, love, companionship, and friendship to a special animal in need. Their program brings happiness and companionship to those most often forgotten in today's society: the elderly, the mentally and physically challenged, and the terminally ill. And this, of all species.

Please visit A Chance For Bliss's Website at http://www.achanceforbliss.com/

Full of Grace: A Special Needs Mother's Teachable Moment

2010-05-28T18:39:00.000-07:00

Jake's fate: In the end, don't we all have special needs?

Friday, May 28, 2010

By Renee Georgi

Margaret Scott / Newsart

Renee Georgi recently received an anonymous letter from "concerned parents" asking her to find an alternative classroom setting for her son Jake, who has autism, because he is a "distraction" to other children and requires "extra time" from teachers. Here is the letter and her reply:

•

Dear Ms. Georgi,

I am writing on behalf of a growing group of concerned parents at Hampton High. While we can understand and even sympathize with you wanting your son Jake in a "normal" learning environment, we feel that the extra time he demands, coupled with his distractions, is unfair to the rest of the children. With getting into a good college becoming more and more competitive, we feel that our children are not getting the education they need due to one child taking up an inordinate amount of time and causing distractions.

We feel it would be in the best interest of all the children if you would consider an alternative setting for Jake. In no way are we faulting you for wanting what you think is best for your child; we only wish that you consider the impact on the other children.

Thank you for your time and consideration with this important decision.

•

Dear Concerned Parents,

In your letter, you asked me to "consider an alternative setting" for my son. With all due respect, I think I'll pass and keep my son right where he is.

You see, my son and the many others like him have fought very, very hard to get where they are today. And the reason they are where they are today is because most of society sees the potential that children with special needs have when they are taught in the way that they learn.

Every year our son makes more and more strides and requires fewer supports in school, giving him a greater chance at becoming an independent, productive member of society who can interact with all types of people. In addition to academics, life skills and social skills, he has also been taught specifically how to work through various distractions in the classroom. Since your child seems to be struggling in this area, I recommend speaking with your child's teacher to learn strategies that work for both regular-education and special-education students.

Another recommendation I would like to make is for you to do an Internet search on the word "IDEA" (Individuals with Disabilities Education Act). You see, according to the IDEA's Least Restrictive Environment or mainstreaming policy, school districts are required to educate students with disabilities in regular classrooms with their non-disabled peers, in the school they would attend if not disabled, to the maximum extent appropriate.

It is the law.

I think this might help you understand why schools like Hampton have co-taught classrooms. If you do a bit more research, I think you will also find that IDEA's positive impact has been across the board with both regular-education and special-education students. I firmly believe that the students who take the time to get to know their fellow classmates with special needs will likely end up being the successful leaders and role models in the world who have the skills to interact with all types of people.

Over the years I have had many parents approach me and tell me how much their children have enjoyed getting to know my son and how much the relationship has enriched their children's experiences at school. Parents tell me that the things my son teaches their children simply can not be taught in a text book or by a teacher. They are life lessons.

I attribute this positive mindset on the part of these children to both the guidance they receive at home and to the district's teaching of a civic virtues program to the students over the past several years. Perhaps the program should be made available to parents, as well, since it is apparent that the students are not the only ones who could use a good lesson in virtues such as kindness, respect and tolerance.

In closing, I ask that you address any of your concerns to your children's respective teachers in the future. Like many parents, I have found the staff at Hampton to be most engaging, helpful and willing to assist parents with individual educational concerns such as yours.

Sincerely ...

Renee Georgi is a pre-school teacher and mother who lives in Hampton (renee.georgi@verizon.net).

Top 20 Reasons Moms of Special Needs Kids ROCK

2010-05-06T06:07:00.000-07:00

HAPPY MOTHERS DAY to all special needs moms! I hope you enjoy this list of the top 20 reasons we are special (sent to me by momlogic).

Top 20 Reasons Why Moms of Kids With Special Needs ROCK

1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT naysaying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever.

20) Because ... well, you tell me.

Courtesy: Love That Max.

Read more: http://www.momlogic.com/2010/05/top_20_reasons_moms_of_kids_with_special_needs_rock.php#ixzz0n9dV5Gz5

Haley Moss: Out of Autism's Closet

2010-04-02T05:29:00.000-07:00

She could not talk until almost Kindergarten age, but went on to become a straight-A student at a prestigious private school. Now "out of the closet" with her autism, Haley Moss has written a book to help other teens with autism find their way.

Three cheers for Haley Moss, her parents, and all who helped her along her road! I wish her mother would write a book too -- note her words about people pulling away from them when Haley was diagnosed, and their decision to be "closeted."

"In middle school, everyone just cares that you're like them, and if you're different, you get picked on." --Haley Moss

Teen with autism advises other 'different' kids

By Elizabeth Landau, CNN

April 2, 2010 5:47 a.m. EDT

Haley Moss, 15, loves art and has exhibited paintings in South Florida.

STORY HIGHLIGHTS

Haley Moss, 15, wrote a guidebook for middle-schoolers with autism
Understanding nuances of socializing is hard for people with high-functioning autism
Family feels relieved that Haley's autism is out in the open

(CNN) -- Figuring out what's cool. Struggling for acceptance. Dealing with homework. These are familiar perils of middle school. But Haley Moss did it all while dealing with a hidden challenge: autism.

Now Haley, 15, is using her experience as a person with autism to help others deal with middle school. She wrote and illustrated "Middle School: The Stuff Nobody Tells You About," which details her advice for students.

Autism is a developmental disorder that impedes communication and social interactions, and it often includes repetitive behaviors. Diagnosed in childhood, the condition prevents some people from ever learning how to talk. As many as 1 in every 110 children in the United States has an autism spectrum disorder, according to the Centers for Disease Control and Prevention.

Haley's case is on the high-functioning side of the autism spectrum. She has always attended regular schools, doesn't have special classes and is a straight-A student at a prestigious private school in South Florida.

"Most people just notice that I'm shy, and that I don't eat a ton of food at school," said Haley, of Parkland, Florida. "Other than that, I come across pretty normal."

Haley has had a long history of working on that shyness. When she received her diagnosis of autism at 3, she couldn't talk yet. She didn't start speaking until 4. Her parents got her private speech therapy as well as hippotherapy, a technique that involves a horse and a speech-language pathologist that has been shown to increase verbal communication in some children.

Children with autism who become high-functioning like Haley typically show great improvement within the first few years of therapy, said Dr. Bob Sears, pediatrician and author of "The Autism Book." By 7 or 8, they will have overcome many of their challenges. Early intervention is critical; treatment should start as soon as possible, he said.

Perhaps the greatest challenge for people with high-functioning autism is understanding the nuances of social interaction, Sears said. Haley relates to this.

"Sarcasm sometimes really confuses me," Haley said. "The jokes that these kids make don't make any sense."

Haley speaks fluidly and articulately. She is well-versed in public speaking, but she still has problems starting conversations. It's easier if people start talking to her first, she said. She has a passion for art and enjoys playing video games, but these are not common interests of girls at her school.

"I don't know what to say to some of my typical peers, because I can't easily launch into discussion about makeup and, like, their boyfriends as easily as they probably could talk about something else with me," she said.

But Haley also believes her autism also helps her in school. She can memorize things faster than most of her classmates, so it doesn't take as much work to study for tests. And her friends rely on her to give advice about social situations that's different from what most people would say, she said.

Being a parent of a child with autism was isolating for Haley's mother, Sherry Moss. She remembers bringing it up with other parents when Haley received her diagnosis. They thought it was contagious.

"They didn't want their kids to play with Haley anymore," she said. "So then, I never told anyone any more."

The family has always informed school administrators about Haley's autism. But they kept the matter private otherwise until Haley developed a following for her artwork as her paintings were displayed at various galleries in South Florida last year.

"Once she started getting well-known, I was like, 'Now's the time Haley, now you have to be the face of autism and let people know what we went through, and give them hope,'" Haley's mother said.

Haley went public in school when her teacher encouraged her to talk about autism in relation to her first art show. She also spoke at an Autism Society of America event last year.

With Haley now open about her autism, the whole family feels relieved, her mother said. Haley also thinks that being "out" in school is easier.

"It helped other people understand why I'm shy. It didn't help socially at all, but it helped those who were somewhat social with me understand why I am the way I am," she said.

Much of Haley's advice in the book applies across the board for anyone in middle school, but she includes anecdotes written from other kids with autism spectrum disorders as well as teacher perspectives. She also tells about her personal experiences from the three schools she attended for sixth, seventh and eighth grade.

Here are some tips from Haley:

1. Seek help if you don't understand something

People with autism spectrum disorders are often detail-oriented and miss the bigger picture, Haley said. Her mother would read English books with her and discuss the themes to help Haley see them more clearly. Haley recommends consulting parents, siblings, teachers and textbooks if you are stuck on something.

2. Learn about trends to talk about them

Haley's approach to popular culture is methodical and detached: learn about the trends to fit in, even if you don't like them. She saw all the "Twilight" movies on opening night even though she doesn't like the franchise much. She can recognize a popular Jonas Brothers song. Being up on the fads helps with socializing and avoiding ridicule, she said.

"In middle school, everyone just cares that you're like them, and if you're different, you get picked on," Haley said. "No one accepts different people."

3. Trust your parents

People with autism spectrum disorders tend to assume that everyone is trustworthy, and that can make them be easily manipulated, Haley writes. She recommends having a good relationship with your parents and entrusting them with your secrets instead of someone at school.

Her parents help her with academic and social problems. Also, she looks to her mother to interpret classmates' comments that she didn't understand, instead of jumping to conclusions.

Her next big project will either be a book about high school or an autism picture book, she said. Visit her Web site

Federal Appeals Court Rules In Favor Of Special Education Parents

2010-03-25T10:39:00.000-07:00

Learning disability ruling holds schools liable

Bob Egelko, Chronicle Staff Writer

Tuesday, March 23, 2010

Parents of a child with learning disabilities can sue a school district for ignoring the problems and failing to arrange tutoring or other educational help, a federal appeals court ruled Monday.

The decision by the Ninth U.S. Circuit Court of Appeals in San Francisco in a case from Compton (Los Angeles County) is one of the first in the nation on a parent's ability to enforce a federal law that requires schools to identify all children with disabilities and provide them with an appropriate education.

The law allows parents to seek a state administrative hearing to challenge a school's denial of their request to classify a child as learning disabled. In Monday's 2-1 ruling, the court said parents can also demand a hearing, or file suit on the child's behalf in some circumstances, when a school ignores the disabilities.

The Individuals with Disabilities Education Act requires schools to identify and evaluate all children with disabilities who need special education services, and allows parents to file complaints about any shortcomings in the school's procedures, Judge Harry Pregerson said in the majority opinion.

The Compton Unified School District "chose to ignore (the student's) disabilities" and is just as responsible under the law as if it had wrongly rejected her parents' request to classify her as disabled, Pregerson said.

Dissenting Judge N. Randy Smith said the law authorizes parental complaints only to protest a school's wrongful actions, not its inactions or negligence.

He said the law was intended to promote cooperation between parents and schools, but the ruling "weakens parents' role" by making schools solely responsible for monitoring children's development.

Lawyers for the district and the plaintiff, one of its former students, were unavailable for comment. The district could ask the full appeals court for a rehearing or appeal to the U.S. Supreme Court.

The student failed every class as a 10th-grader in 2003-04, the court said. Teachers described her work as "gibberish" and said she sometimes refused to enter the classroom or spent time at her desk coloring with crayons or playing with dolls.

Her mother was reluctant to have her tested for disabilities. A mental health counselor recommended an assessment, but the district instead promoted her to the 11th grade.

Her mother requested an assessment the next fall, and the school placed her in special education. The mother then sued on her daughter's behalf, claiming school officials should have made the placement in the ninth grade - when the girl was performing at a fourth-grade level - and seeking remedial tutoring at the district's expense.

The appeals court upheld a federal judge's ruling that required the tutoring. Even if the law required a parent to prove wrongful action by the district, the court said, the Compton district's "willful inaction in the face of numerous 'red flags' is more than sufficient" to show a violation.

The ruling can be viewed at sfgate.com/ZJKF. E-mail Bob Egelko at begelko@sfchronicle.com.

This article appeared on page C - 4 of the San Francisco Chronicle

Peter Singer: Philosopher, Professor and Advocate of Infanticide for Disabled Babies

2010-02-16T13:36:00.000-08:00

" In the West, we have been dominated by a single tradition for 2,000 years. Now that whole tradition, the whole edifice of Judaeo-Christian morality, is terminally ill. I am trying to formulate an alternative. Some of what I say seems obscene and evil if you are still looking at it through the prism of the old morality. That's what happens when morality shifts: people get confused and angry and disgusted." ~ Peter Singer, “On Killing Disabled Babies”, June 30, 2004.

Dr. Peter Singer of Princeton University would call it "odious" to compare his work with that of the Nazi T4 Program and the Lebensborn Program (though like Singer, "Permission To Destroy Life" published in 1920 Germany categorized those who should be killed for the greater good). He would explain that he did not want to kill my disabled son, but that my life would have been better if I had been given the option of killing him as a baby. He would tell me that he believes parents such as I have a moral right to be able to kill our newborn children if they have disabilities. He would say that we should be able to satisfy our reasonable preferences to have a healthy, typically-developing child with a “better prospect for happiness.” He would also say that we should not feel threatened, for "human beings are not born self-aware, or capable of grasping that they exist over time.” He would tell me that newborns are not persons.

Peter Singer’s moral system of preference utilitarianism is a popular topic in many intellectual circles and in the post-religious societies of Europe. Its central premise is that to be moral, one must do whatever will satisfy the preferences of most living things. Morality, they believe, does not come from God, but from giving what we want and need to as many as possible.

Behind the mask of intellectual beneficence Peter Singer and his followers tell us what is good for us, for the disabled, the sick, the elderly, and the world. Their ethics are concerned with a quality of life which is based on rationality and self-awareness, not the sanctity of life.

"During the next 35 years, the traditional view of the sanctity of human life will collapse under pressure from scientific, technological, and demographic developments. By 2040, it may be that only a rump of hard-core, know-nothing religious fundamentalists will defend the view that every human life, from conception to death, is sacrosanct." ~ Peter Singer, "The Sanctity of Human Life", 2004.

Leo Alexander, a reporter on the war crimes of the Holocaust said, "It all started with the acceptance of the attitude that there is such a thing as a life not worthy to be lived." From the tiniest human beings to the institutionalized elderly, from the disabled who are regarded as without value, to the prisoner on death row, the whole, the broken, the saints the sinners, we must stand for those who cannot help themselves. Human life is not disposable, and every person's life possesses human dignity. Human rights are not a privilege conferred by a philosopher, a medical system, or a nation. They are an entitlement given to every human being by virtue of their humanity.

"I accepted the brains, of course. Where they came from and how they came to me was really none of my business." Dr. Julius Hallervorden on his participation in the Nazi euthanasia program for persons with disabilities and illnesses, 1945.

PRAYER: Heavenly Father, thank You for my life and the life of my child. Open my eyes, my ears, my hands and my heart to the needs of Your people. Turn all hardened hearts toward You, and teach us to love and cherish all of the lambs and sheep of Your flock. Amen.

Dr. Singer is a professor at Princeton University and teaches at the Center for Human Values. He is a member of President Obama's Health Care Team.

Jean Vanier and the Secret of L'Arche

2010-01-03T16:05:00.000-08:00

The secret of L'Arche is relationship: meeting people, not through the filters of certitudes, ideologies, idealism or judgments, but heart to heart; listening to people with their pain, their joy, their hope, their history, listening to their heart beats. - Jean Vanier, L'Arche founder

Jean Vanier has travelled the world creating homes for people with developmental disabilities where they live with volunteers and a small staff in community. He helps teach the world that all are broken in some way. “You begin to discover a whole lot of things about yourself,” Vanier says of living in community with persons with disabilities. He learned that to “be human is to be bonded together, each with our own weaknesses and strengths, because we need each other.”

Jean Vanier is a blessing to all people, and to our world. He has committed his life to helping the marginalized, the lonely, the institutionalized, the forgotten, and the dispossessed. In 1964 he first became aware of the plight of people institutionalized with developmental disabilities, and felt led by God to invite two men to leave the institutions where they lived and reside with him in a real home. Jean Vanier named this home L'Arche, meaning "the ark", (referring to Noah's ark). It was from this original community in France, that more than 13o communities have come to existence internationally.

L'Arche communities reflect the ethnic and religious textures of the locales in which they exist, yet they all share a common philosophy and approach. The goal of L'Arche is to bring people with developmental disabilities together with those who assist them, creating homes and communities that recognize the value and gifts of every person.

L'Arche USA Becomes Member of the Interfaith Disability Advocacy Coalition

Recently, L'Arche USA was invited to join the Interfaith Disability Advocacy Coalition with full board approval. IDAC is a diverse, nonpartisan coalition of religious and religiously-affiliated organizations whose core spiritual values affirm the rights and dignity of people with disabilities. The mission of IDAC, hosted by the American Association of People with Disabilities’ Interfaith Initiative, is to mobilize the religious community to speak out and take action on disability policy issues with Congress, the President and Administration, and society.

A Room At The Inn: A Christmas Story

2009-12-23T14:51:00.000-08:00

I have a wonderful Christmas story to share. I wrote about it last year, and it is worth being told again this year.

A young man identified as "mentally retarded" wanted to be in the Christmas play at his church. The organizers and the others in the play didn't want to include him because they knew he would "mess up."

This Christmas pageant was the church's big event of the year, and the church had become known in the area for their portrayal of the Nativity story. So it was with great hesitation that they let this young man participate. They decided to make him the Innkeeper so he would only have to stand in one place and say one line: "There is no room at the Inn."

The night of the play came, and the church's auditorium was filled. The moment arrived when Mary and Joseph knocked on the door of the Inn. The young man with special needs answered the door as he had been instructed, stood in the spot as he had been told, and recited his line. "There is no room at the Inn," he said boldly and clearly.

Mary and Joseph turned to walk away. When the young man saw that Mary was weeping on Joseph's shoulder, he jumped out of his spot and ran to them.

"Wait! You can have my room," he said.

Some in the play and in the audience thought the pageant had been ruined that night. But others knew better.

Merry Christmas, and may God bless you all.Theresa

Have Yourself A Merry Special Needs Christmas

2009-12-18T09:13:00.001-08:00

Are you feeling frustrated by the circumstances of your life? Are the holiday preparations and anticipations making you nervous? Often, the burden of our overwork as special needs moms can lead us to feelings of anxiety, turmoil, apprehension and depression. Doctor's appointments, IEP meetings, medical testing, holiday shopping, traffic jams -- it doesn't take much for our teetering schedules to spin out of control. How can we overcome our feelings of frustration when they occur?

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Psalm 34:18 The Lord is near to the brokenhearted and saves the crushed in spirit.

John 4:4 Little children, you are from God and have overcome them, for he who is in you is greater than he who is in the world.

Luke 12:27 Consider the lilies, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these.

Psalm 46:10 Be still and know that I am God.

When we are overwhelmed and do not know what to do, remember that God will provide for us as He has always. His peace is there for the taking whether we have been dealing with our child's needs for a long time or if we have just recently received their diagnoses. If our lives don't look like most people's, and we don't conform to the norm, let it be. We have our own road, and we are not alone upon it. You and your child are unique. God had a plan for you long before either of you took your first breath. The call to us from Scripture is clear. We are to be still. Stand still — not because of our own countenance or sense of composure, but because God is our refuge and our strength.

There is peace where the humanity and humility of our special families meet God's mercy and grace. May your family's Christmas be unique, holy, still, and blessed. Love, Theresa

NOTE: Please take a listen to Immanuel (God Is With Us) below. It is sung by children in England -- it is as if they are singing it to us and to our children. THIS,my dear sisters in the Lord, is our Christmas.
http://www.youtube.com/watch?v=iE_tuMpIOho

Twas The Night Before Christmas, A Very Special Version

2009-12-17T16:56:00.000-08:00

Friends, this was sent to me by a mother of a child with Autism. I think it resonates with special needs mothers regardless of the diagnosis of our children. It was written by Cindy Waeltermann, Director, AutismLink.

May God bless you and your beautiful children this night, Theresa

Twas The Night Before Christmas (In a Special Needs Family's Home) by Cindy Waeltermann, Director, AutismLink

Twas the night before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
Asleep early for Christmas?
...an unlikely path

The children were finally
All nestled in bed
When visions of Christmas
Ran through my OWN head

Did I get the right gift?
The right color and style?
Would there be a blank stare
Or even, maybe, a smile?

Friends & family come
But they don't understand
The pleasure he gets
Just from bending his hands.

"Just make him stop it," some say
"Just tell him "no",
You must learn to be tough.."
On, and on they do go...

We smile and nod
Because we know deep inside
The debate is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions

But what some don't know
And what some don't see
Is the joy that we feel
Over simplicity.

He said "hello"!
He ate something green!
He looked me in my eyes
He did not cause a scene!

He peed on the potty!
Who cares if he's ten;
He stopped saying the same thing
Again and again!"

Some others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With envy, with wonder,
Or even distaste,

What we want them to know
What's important to see
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try so hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you…

That even 10 minutes
Into the walk
You'll look at us all
With respect, even shock.

You will realize
What it is we go through
And the next time you see us
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years I learned too
When the tables were turned."

Author: Cindy Waeltermann, Director, AutismLink

__._,_.___

Acceptance: My Compass, My Prayer

2009-12-14T09:02:00.000-08:00

To yield but not capitulate. This is my motto and my daily prayer.

As the mother of a child with special needs and a life-threatening illness, I have come to embrace that my life is not my own. My compass is acceptance -- not the kind that surrenders to injustice or abuse, but the kind that yields to the reality of what I cannot change or do about a situation. It is an acceptance that understands and trusts that God has a plan for my life and the life of my child. It is an acceptance that frees me to do that which is within my power, and that to which God is calling.

True acceptance is not resignation, it is not powerlessness. It does not leave me feeling beaten or discouraged, but rather, serene. It is not passive. It does not preclude the possibility of change. It requires me to feel, not to deaden or push my emotions away. It asks me to bend, not to break.

In "The Inner Voice of Love" Henri Nouwen, a Catholic priest, wrote that we are constantly facing choices, and that the root choice is to trust that God is with us at all times. He helps us see that God will give us what we most need. In 2 Corinthians 12:7-9, the Apostle Paul wrote about the thorn in his flesh and how he prayed for it to be removed. God's answer was not its removal, but an assurance of His grace: "My grace is sufficient for thee; for my strength is made perfect in weakness."

Friends, the acceptance that is my compass is not a compensation for my pain or the suffering of my child -- it is an outgrowth of it. I pray to be open to God's graces and and His Will in and over my life. I work to focus not on avoiding my trials or hoping they go away, but on the truth that God will be my strength and supply the grace I need to persevere. Thorns and all.

Peace be with you and your families this day. Love,

Theresa

John the Baptist, John the Light of Advent

2009-12-09T10:46:00.000-08:00

We in the Christian Church are in the Season of Advent. The word 'advent' is Latin for 'a coming or arrival'. Advent in the Church is a season of preparation; we are waiting for the arrival of the Christ Child on Christmas Day.

When we think of Advent and preparing the way of the Lord, we often think of John the Baptist. He is one we most closely associate with Advent, yet how much do we really know about him?

We know that John's parents, Zachary and Elizabeth, were childless and prayed that their union would be blessed by a child (Luke 1:6-7). Their prayers were answered when late in life, Zachary was visited by an angel of God who said, "...Thy prayer is heard; and thy wife Elizabeth shall bear thee a son, and thou shalt call his name John."

We know, too, that John the Baptist was related to Jesus Christ. Their mothers, Mary and Elizabeth, were cousins (Luke 1:36).

St. Luke tell us "the child grew, and was strengthened in spirit; and was in the deserts until the day of his manifestation to Israel (1:80).

In Matthew (3:1) we learn that John lived in the mountainous area of Judah, and his clothes were made of camel's hair and belted by leather. His food consisted of locusts and wild honey. (Matthew 3:4).

John had a popular ministry. "People went out to him from Jerusalem and all Judea, and the whole region of The Jordan. Confessing their sins, they were baptized by him in the River Jordan (Matthew 3:5-6). Among his disciples were the future apostles Peter and Andrew.

John baptized Jesus Christ: "Then Jesus came from Galilee to the Jordan to be baptized by John. But John tried to deter Him, saying, "I need to be baptized by You, and do You come to me? Jesus replied, "Let it be so now; it is proper for us to do this to fulfill all righteousness." (Matthew 3:13-15).

John was questioned at the height of his popularity if he was the messiah and answered, "I am not the Christ, but I am sent ahead of Him." (John 3:28).

As Jesus Christ's ministry began to strengthen, John recognized that his own was coming to an end: "He must become greater; I must become less." (John 3:30).

St. John was a prophet who announced the coming of Jesus, "I am the voice of one crying out in the wilderness, 'Make straight the way of the Lord.'"

Imprisoned and later executed, Jesus said of him to his followers, "John was a lamp that burned and gave light, and you chose for a time to enjoy his light." (John 5:35).

John was a lamp that burned and gave light, and you chose for a time to enjoy his light. This is who was, and is, John the Baptist. The voice of one who cried out in the wilderness, a lamp who burned and gave light. No angels, shepherds, wise men, or stars heralded his coming (though the heavenly messenger Gabriel spoke to his father about his birth and call.) Yet from his obscure place in the wilderness he moved the world.

May we choose for a time to enjoy his light this Advent.

Peace, Theresa

PRAYER: Lord, we thank You for being newly born into our world again this Christmas. Help us to slow down and enjoy the light of Advent as we prepare the way for You. Amen.

Overwhelmed?

2009-11-30T06:27:00.000-08:00

This Far Side cartoon by Gary Larson frequently resembles the cry of my life: "God, my brain is full, may I please be excused?"

It’s easy to get overwhelmed by the needs of a special family. School appointments, work demands, tasks of daily life, conflicting schedules, overbooked medical and therapeutic appointments -- we go on like the Energizer Bunny who keeps going and going, until all of a sudden, thud.

Though we intuitively know our bodies and minds are not created for endless activity and stress, we often push ourselves as though they are. The demands of our lives are plenty. So how can we ride out the storms that overwhelm us? By anchoring our minds and hearts on the Lord. When there is a storm raging outside or inside, we must remember that it's safer to stay anchored to God than it is to go with the flow of the tide that threatens to pull us under.

In 1 Corinthians chapter 14 we are told that God is not the author of confusion, but of peace. I offer these suggestions as possible routes toward finding His peace:

Concentrate only on the things that are necessary. Ask God to help you discern what needs to be done. I have a doctor-friend who says in times of difficulty we need to triage. Treat your life like an ER and triage your troubles.

Meditate on Biblical teachings and stories that resonate with your situation or frame of mind. Remember the miracle of the single loaf that Christ used to feed many? Perhaps you can break your tasks into smaller parts to accomplish the many. Is there a way to work on one little piece at a time?

Read "The Sacrament of the Present Moment" by Jean-Pierre de Caussade. "The will of God is manifest in each moment, an immense ocean which only the heart fathoms insofar as it overflows with faith, trust and love."

Rest in the Lord. This need not entail attending a service or sitting for a half hour in contemplative prayer (although both are recommended when possible). Take any moment you can and use it for good. Waiting at a red light? Visit with the Lord. Loading the dryer? Let Jesus help you load the clothes. Walking in the grocery store? Take the hand of Christ and walk with Him. It is when we are worn out that anxious sensations come over us. We must let God into every moment of our lives. He is waiting for us to invite Him in.

It is important that we hold on to the truth that the darkness of our situations can never diminish the Light of Christ. It may seem like the world is crumbling around us, but God can, and will lift us. He will set our feet upon the rock.

God promises us that when life is overwhelming He will work with us.

Psalm 61, verse 2 offers some support in this direction: "From the end of the earth I will cry to You when my heart is overwhelmed. Lead me to the Rock that is higher than I."

Remember that in the midst of our tears we can find that God is good, and in the bleakest of situations we can find hope. With God’s grace, we will transform the circumstances of our lives into refining experiences that help us become the people He wants us to be, knows we can be, and created us to be.

Go in peace this day. Love, Theresa

PRAYER: Dear Lord, when I am struggling with the demands of my special needs family or when I am overwhelmed with life itself, help me find your presence. Fill me with Your peace and draw me into a closer relationship with You. Remind me that nothing can stop the purpose and plan that You have for my life and the life of my children. Thank you for bringing us rest, and for being our Rock, our Shelter in the storm. AMEN.

Grace Before Meals: A Blessing and a Movement

2009-11-23T15:55:00.000-08:00

As I try to find more creative ways to feed my son who is struggling with chewing and swallowing problems, I have found a new hero. His name is Father Leo Patalinghug.

Ordained in 1990, and working as a parish priest in Maryland, Father Patalinghug started a movement called Grace Before Meals. GBM first took shape when Fr. Patalinghug "turned the tables" on his parishioners who invited him to dinner -- he cooked for them! These times spent making a meal together provided the inspiration for his first book, Grace Before Meals: Recipes for Family Life.

GBM is about so much more than cooking, recipes and food. It is about strengthening relationships, building ties with one another, healing, understanding and love. Here are a few ways you can incorporate the GBM philosophy into your daily life (from his Website) :

Eat meals with my family five days per week (or as many as possible).
Engage the family in conversation while preparing meals.
Say Grace before each meal.
Turn off the TV while eating dinner.
Introduce interesting topics for the family to discuss at mealtime.
Tell Friends and Family about the Grace Before Meals Movement.

I encourage you to visit his Website (http://www.gracebeforemeals.com/) and sign up for his Weekly Blasts if you feel so moved. I wrote and asked him if he would consider doing some recipes for tasty and nutritious pureed foods and thickened drinks for those of us with loved ones with chewing and swallowing issues, and he said he would.

Below please find a wonderful article about a family who chose not to get a feeding tube for their aged mother. No matter what side of the feeding tube issue you may stand on, I believe you will find it a tender and thoughtful story. Peace be with you tonight, my beautiful friends in the Lord. Love, Theresa

Alzheimer's and Eating: A Taste of Home
My patient wasn't eating. Why wouldn't her daughter allow a feeding tube? Toni Martin, MD.

The deep fragrance of soy and garlic wafted out to the nurses' station from Mrs. Lee's room, signaling that her daughter, Mrs. Wong, had arrived with lunch. Time for me to make rounds. Mrs. Wong was her mother's interpreter and advocate, as well as her cook. When I walked in, Mrs. Wong was untying the handles of white plastic bags bearing red Chinese lettering. Inside were rectangular plastic containers of food: a large portion of congee, the thick rice soup that was the staple of Mrs. Lee's diet. Smaller dishes of sesame-scented bean sprouts and cabbage. Buttery soft pork and noodles. I watched as Mrs. Wong broke off tiny morsels of soft, white steamed buns and poked them tenderly into her mother's mouth.

Mrs. Lee was a regular on the medical ward, usually admitted with pneumonia and dehydration. Her Alzheimer's disease was far advanced, and she often forgot to put the food in her mouth; if she remembered, she forgot to chew. Like many elderly patients who stop eating, she was almost unresponsive when we first saw her. After a few liters of intravenous fluid and antibiotics, she perked up. She reminded me of a tiny bird -- mostly bones, with shiny dark eyes. Even when she was feeling her best, she could not talk, but her eyes diligently tracked her daughter as she moved around the room.

We suspected aspiration as the cause of her recurrent pneumonia, although she swallowed well enough when Mrs. Wong prompted her. Between admissions she returned to a skilled nursing facility but never seemed to regain her strength. I assumed they did not take the time to feed her, but when I called to ask how she had been getting along, the nursing supervisor told me that Mrs. Wong fed her at least one meal there every day.

The sad fact was that despite her daughter's best efforts, Mrs. Lee did not eat enough calories to sustain herself. Other doctors before me had suggested placing a feeding tube in her stomach, a procedure known as percutaneous endoscopic gastrostomy (PEG). Then we could supplement her oral intake with a high-calorie liquid formula and possibly decrease the risk of aspiration. If she were not so malnourished, she might be able to fight the infections better. But Mrs. Wong had always refused.

When I broached the subject again, Mrs. Wong demonstrated that her mother could take a few bites of cabbage. She fed her two spoonfuls of congee. Then she called in her husband, who usually sat quietly in front of the elevator with more shopping bags. He spoke no better English than his wife, but I understood that his presence added authority to our conversation.

The next day on rounds, I called for a hospital interpreter. I wasn't sure I was communicating the concepts of quantity and calories. The Wongs had told me that they did not want Mrs. Lee resuscitated, but did they understand that antibiotics and fluids could not cure malnutrition?

After an animated exchange with the interpreter, Mrs. Wong opened another container, garlicky broccoli softened almost to a puree. Again she coaxed her mother into swallowing a spoonful, and the family beamed. The interpreter shrugged his shoulders.

"She understands," he assured me. "She wants to feed her mother. No tube." We all bowed slightly, and I left to write my note.

There are vast numbers of people with Alzheimer's disease: approximately 4.5 million Americans, including more than 40 percent of those over 85. Mrs. Lee was one of the lucky ones, because she had a caring daughter. Often I find myself negotiating treatment decisions with a county-appointed conservator because the patient has no relatives. In my California county, conservators will not authorize do-not-resuscitate status for permanently unresponsive nonverbal patients. If Mrs. Lee had a conservator, she would have had a feeding tube, even if she was so confused that her hands had to be tied down to keep her from pulling it out. Of course, the conservators don't have to visit the patients.

Had Mrs. Lee lived a few decades earlier, there would have been no PEG. When placing a permanent feeding tube meant opening the patient's abdomen, it was rarely done. Today an endoscopist passes a tube into the stomach and shines a fiber-optic light from the inside to mark a spot, and a surgeon cuts just enough to insert a feeding tube through the skin into the stomach. So easy. Easier than coaxing patients to eat or allowing them to die naturally. Very few people, even if they have told their families they do not want "heroic measures" at the end of life, have left instructions about tube feeding. This leaves physicians in the sort of moral quandary we found ourselves in with Mrs. Wong.

Meanwhile, at the hospital, another week passed. The utilization reviewer asked when Mrs. Lee would be leaving. Each time she was close to discharge, her temperature rose again or her oxygen needs increased. I cultured and X-rayed her again. I added antibiotics and arranged an infectious disease consultation, but it was clear she was failing.

I told Mrs. Wong that I didn't think her mother was going to make it this time. She said nothing. Mrs. Lee was less responsive now, but when Mrs. Wong lifted the oxygen mask to slip in a spoonful of congee, she swallowed. I nodded to Mr. Wong in front of the elevator. He reminded me of pictures I had seen of seated statues found in royal tombs in China. He sat in service to his dying mother-in-law the way they sat in eternal service to the dead.

When the elevator doors opened the next morning, he was not there. Mrs. Lee had died during the night. I never saw the Wongs again.

Mrs. Lee's last year frustrated her doctors. Despite our antibiotics, we knew she would not survive. It did not make sense to keep treating pneumonia without giving her more nutritional support. We wanted Mrs. Wong to allow us to treat all the way or to give up entirely.

Instead, she forced us to find another way. She understood that her mother was dying, that eating is the last activity of daily living that we lose. Perhaps she also knew that people still aspirate, even their saliva, when they have stomach tubes in place. Had she read that there is a mortality rate of 40 to 50 percent at six months in patients with gastronomy tubes? Probably not. We told her that it was easy to place a PEG. She taught us, again, that tough ethical decisions lurk behind easy procedures.

Mrs. Wong prevailed. Her mother's last nourishment was a rich taste of home from her daughter's hand.

-- Toni Martin, MD, is a board-certified internist and geriatrician who has practiced in Oakland, California, for 20 years. She has served as Chief of Patient Education at Kaiser Oakland and is a member of the clinical faculty at UCSF Medical School. She is also the author of How To Survive Medical School (Holt, Rinehart, and Winston, 1983). This essay first appeared in the July/August 1999 issue of Hippocrates and is reprinted here by permission of the author.

The Story of Dax and God's Helpers

2009-11-20T09:00:00.000-08:00

Have you heard the story of 2 year old Dax from Illinois? It is a sad story, and I must tell you that I wept when I read it and saw the video on CNN. But as I dried my eyes I knew this blessed child accomplished so much in his short time on earth, and I very much wanted to help spread his story.

Dax's doctors say he may not make it to Christmas. He is battling a rare form of cancer, and treatments have now stopped. He knows he will be going to be with the angels. His family, neighborhood, and now countless others, are banding together to bring Christmas early to Dax.

The news reports tell us about the loss of a child, his parents, his family, their strength, God's grace, mercy, human endurance, love... And they tell us, too, about the helpers.

Dax's story is full; it tells us to love, and reminds us to focus on what is important in life. Let his story remind us too, that when we see someone in need, witness a tragedy, or know someone who is at the end of their ability to cope, God is probably calling us to be one of His helpers.

I encourage you to go to CNN's Website and watch the video of Dax. It is beautiful. I ask that we remember all children who are ill, and lift them and their parents up in prayer this day. Amen.

BRIGHT LIGHTS SHINE FOR DYING BOY -- CNN

On a crisp Halloween night,icicle lights and Santa Clauses mingled with ghosts and jack-o'-lanterns in a Washington, Illinois, neighborhood.

The community is helping a family squeeze in a little extra holiday cheer with their young son.

Doctors say 2-year-old Dax Locke is losing his fight with acute myeloid leukemia and may only have weeks to live, so parents Julie and Austin Locke put Christmas lights up outside their home for the little boy, who loves glowing things. Dax opens presents each day under a tree that's already been up for several weeks.

"We don't have much time left with Dax, don't know if he will make it to Christmas, so we wanted to have Christmas early," Julie Locke told local news station WMBD.

Neighbor and friend Trish Hurtgen says she and her husband were inspired by the family's efforts, so they put up their own lights and encouraged neighbors to do the same. Soon, the entire block was lit up with Christmas lights. They also planned a special surprise for the family.

While the Lockes traveled to Chicago's Shedd Aquarium for a special trip with Dax, the neighborhood banded together to decorate a huge tree in the family's yard so the Lockes could be delighted when they returned just after Halloween.

From there, she and other neighbors have helped encourage people to show silent support for the family by putting up Christmas lights at home and around the community. The effort, called Decorate for Dax, has its own Web site with space for people everywhere to send pictures and see others' displays.

Hurtgen calls the Lockes a "family of courage" that she found inspirational, and she wanted to help if she could.

"This is a family who stayed united and formed a team to help Dax," Hurtgen said. "They gave everything they had. We're trying to do the same thing."

Dax has spent past holidays at St. Jude Children's Research Hospital in Memphis, Tennessee, but this year, he's at home. Save for receiving palliative radiation to improve his quality of life, he is off cancer treatments.

Hurtgen says Dax enjoys going for car rides and seeing the lights on around him. The family plans to make a book out of photos that people send so Dax will be able to see all the lights for Christmas if he's too sick to go outside.

iReporter Cindy Miller lives in the area and got involved in local neighborhood decorating projects. She posted a video on CNN iReport to raise awareness of the Decorate for Dax project. She narrated a drive through Dax's neighborhood shortly after Halloween, and many houses were illuminated.

During one project, locals put up lights and luminarias at a local park. Miller sent photos and video of the illuminated areas she spotted, including a red, white and green sign with Dax's name in bright lights.

Miller said her heart was warmed by all the work the community put into the decorations, and she was overjoyed to see Dax out with the family amid all the people helping to decorate.

I sobbed like a baby, but was overjoyed at the show of support for this family
--Cindy Miller, iReporter. "I sobbed like a baby, but was overjoyed at the show of support for this family who may not have their baby here at Christmastime. It's unusual to see Christmas lights up so early, but this year, there's a good reason."

Hurtgen says she's been surprised by how Decorate for Dax has taken off. Submissions have come from all over the United States and in far-flung countries like Australia and Germany.

"I don't know how the word is getting out," Hurtgen said.

Hurtgen added that one woman even wrote in to say that her husband, stationed in Afghanistan, was working with fellow troops to photograph a lights display for Dax.

Some of the colorful and bright displays she's seen include big signs with Dax's name on them and holiday-themed shapes and figurines. Other displays are more humble, like a message from another boy in a hospital and a makeshift tribute inside a tiny apartment.

"It doesn't have to be big, just your way of showing support."

The Lockes aren't the only family hosting an early Christmas. Diana Biorkman of South Lyon, Michigan, told CNN affiliate WDIV that her son, Noah, is dying of a Stage 4 neuroblastoma, which is a type of cancer that forms in nerve tissue.

Noah loves opening mail, so the family asked people to send him a Christmas card. Word got out, and he started getting gifts and cards from strangers. The family recently picked up a carload of mail and toys. Detroit Tigers baseball player Brandon Inge even sent a card and stopped over for a "play date" that included building a snow fort with Noah.

Hurtgen says the silent show of support works well for their community because Dax needs his rest and the family needs their privacy.

Perhaps, she said, people will see this odd display of early lights and wonder what is going on. Maybe they'll also pause for a moment to think about Dax and about what they can do to help. The family is asking people to make donations to St. Jude.

"That's what Christmas is about, giving and not needing to get in return."

Everyone is holding out hopes Dax will make it to Christmas.

"Christmas would be a miracle. We're praying for a big miracle."

Share your H1N1 advice, stories, and plans

2009-11-01T13:59:00.000-08:00

It might be helpful for us to share our H1N1 stories, plans, and advice as the virus is spreading, and our chances of encountering it are increasing. Please feel free to post your comments below.

My 10 year old has just been diagnosed with H1N1. We have him secluded in his bedroom, but this has not been difficult to enforce as he is too sick to even get out of bed. We are caring for him while keeping our other son who has special needs as far away from him as possible. Windows are open, hands are washed (and washed again), telephones, door handles, bathrooms and just about every other surface in the house are continuously wiped with alcohol.

The H1N1 vaccine was not available to us in Massachusetts. Clinics planned in our town had to be canceled because the vaccines were never received. We're on waiting lists. But for our family, it's too late. The virus is already here.

Our healthy 10 year old is very sick, a high persistent fever has us on guard and watching him very closely. I try not to think of what could happen to him or our other son should he contract the virus. I work to stay in the present moment. I remind myself that today our 10 year old is holding his own against the virus. Today our other son is not showing any signs of it. Today we are coping. And should this change, I remind myself that the Lord will be right there beside us as we make our way through.

PRAYER: Lord, we know that You are The Great Physician. We ask that Your peace be with all who are suffering from illness this night. We ask You to provide the doctors, nurses, and family members who are caring for the sick, the wisdom and grace to minister according to Your will. We especially thank You for holding those who are alone in their suffering and sickness, and know that You will lighten their darkness this night. Jesus, we trust in You. AMEN.

A Time To Laugh, A Time To Mourn

2009-10-28T08:59:00.000-07:00

I am taking an online course through Boston College's School of Theology. One of the questions in this week's assignment reminded me of one of my favorite movies. It is called Lorenzo's Oil.

Lorenzo's Oil is a movie based on the true story of Augusto and Michaela Odone and their fight to save the life of their son, Lorenzo. They are a Catholic family, and their faith in God is front and center in their family's life and plight.

Lorenzo, who was diagnosed in early 1984 with ALD (a then- incurable neuro-degenerative disorder) was beyond the help of conventional medicine. Unwilling and unable to give up or give in, they began their own research into the disease to help find a treatment and cure.

Lorenzo's Oil is about a family's struggle, the quest for knowledge, and the victory of hope through perseverance. For two hours, we witness each battle and each triumph. The Odone's, a family who hold on despite tremendous grief, guilt and pain, strive to help their son (and all boys). They are models of faith, hope, courage, and wisdom.

I have purchased copies of the film over the years for friends and family members because of its realisitic portrayal of a family dealing with their child's life-threatening illness. I frequently watch my own copy of the movie -- it helps me access my emotions when they are closed up tightly, and it has given me strength when I have felt tired or beaten down.

A friend told me a few weeks ago that courage is fear that has said its prayers. So friends, let us join together and pray.

PRAYER: Father, we thank You for our lives. We open ourselves to Your presence. We know that there are times when we must embrace difficulties and pain. You tell us in Ecclesiastes that there is a time to laugh and a time to mourn. We ask that You, our Prince of Peace, remind us that Your hand is always upon us, guiding us through our day. We know that You always have a plan for our lives, even we we cannot see what it is. AMEN.

Love, Theresa

Life Is Short -- This Is Your Time, Make It Count

2009-10-15T05:54:00.000-07:00

Short and Sweet
by Charles R. Swindoll

James 4:13-17

Average life spans are shorter than most of us realize. For instance, a face-lift lasts only six to ten years; a dollar bill lasts for only eighteen months; a painted line on the road remains only three to four months; and a tornado seldom lasts more than ten minutes.

There are differences of opinion, but most agree that the human life span averages somewhere between seventy-five and eighty years. That may sound encouraging to the young and disturbing to those in their sixties, seventies, and eighties. The simple fact is, however, nobody knows for sure how long he or she may live.

When we read and believe the warnings in Scripture, there is little doubt that life is short. James pulls no punches when he writes, "You are just a vapor that appears for a little while and then vanishes away" (4:14).

The average life span may be seventy-five to eighty years, but who can say you or I have that long? We may have less than two years or, for that matter, less than two weeks. Vanishing vapors aren't known for longevity.

Since this is true, let's do our best to make the time we have count. Rather than live with reluctance, let's live with exuberance. Instead of fearing what's ahead, let's face it head-on with enthusiasm. And because life is so terribly short, let's do everything we can to make it sweet.

How? Three thoughts come to mind.

First, act on your impulse. Don't wait for the perfect moment. A woman in my former church took these words to heart and contacted a person she hadn't talked to for a long time. The person was surprised and thrilled. "You have no idea how much your call has meant to me," she said. Later the woman who had received the call admitted she had planned to take her life that very afternoon. The call had changed her mind.

Second, focus on the positive. Merchants of negativism may be strong and sound convincing, but their message is debilitating. Life's too short for that. Spread germs of cheer. Joy is contagious.

Third, traffic in the truth. Refuse to stake your claim on hearsay. Check out the facts. Be discerning. If you are a conduit of communication, speak only the truth. If you're not absolutely sure, keep quiet. Lies can outlive lives, unfortunately.

Short and sweet. That's the only way to go.

Have you been putting off something you really want or need to do?
You don't have forever. Get at it!

What Do Martin Luther, Neil Young, Napoleon Bonaparte And Danny Glover Have In Common?

2009-10-10T15:07:00.000-07:00

ANSWER: They are all famous people with epilepsy.

Epilepsy is a common neurological disorder caused by disturbances in the normal eletrochemical functions of the brain. It is a condition that affects an estimated 2.7 million Americans, 50,000,000 worldwide, and impacts millions more. One in three adults reported that they know someone with the disorder and/or have witnessed a seizure. Approximately 200,000 new cases of epilepsy are diagnosed each year -- yet epilepsy remains one of the least understood of all the major chronic medical conditions.

One in 100 teenagers has it, it is not contagious, and it is not a mental illness. There are different kinds of seizures. Some are convulsive, some cause the person to stare, others create quick body jerks, tingly feelings or periods of confusion.

Please visit the Epilepsy Foundation's Website for more information on seizures and epilepsy. Someone you know may be depending upon it.

PRAYER: Heavenly Father, we thank You for all the doctors, nurses, researchers, and activists who are working to help those suffering from seizures and epilepsy. You hold each of us in the palm of Your hand, and we know that with You we will find the strength to endure the challenges set before us. AMEN.

FAMOUS PEOPLE WITH EPILEPSY: (Compiled From Internet Lists)

Vincent van Gogh - (1853 - 1890)

Sir Isaac Newton - (4 January 1643 – 31 March 1727)

Neil Young - (born November 12, 1945, Toronto, Ontario) A musician known for his meaningful lyrics and also a spokesman for environmental issues, Neil Young has been labeled one of the greatest guitarists of his time.

Napoleon Bonaparte - (15 August 1769–5 May 1821)

Agatha Christie - Dame Agatha Mary Clarissa, Lady Mallowan, DBE (15 September 1890 – 12 January 1976), commonly known as Agatha Christie, was an English crime fiction writer.

Charles Dickens - Charles John Huffam Dickens, FRSA (17 February 1812 – 9 June 1870), pen-name "Boz", was the foremost English novelist of the Victorian era, as well as a vigorous social campaigner. The Victorian author of such classic books as A Christmas Carol and Oliver Twist had epilepsy, as did several of the characters in his books.

Alexander the Great - Alexander the Great (July 20, 356 BC – June 10, 323 BC), also known as Alexander III, was an ancient Greek king (basileus) of Macedon (336–323 BC).

Danny Glover - (Born July 22, 1947) A great actor in both Lethal Weapon with Mel Gibson and Predator 2. Danny Glover suffered dyslexia at school when he was younger and the school staff would label him retarded. Danny Glover also had epilepsy and at an appearance on the Rosie O'Donnell Show told how he had developed epilepsy at the age of 15, and in one cross-country trip with his family had experienced six seizures in a row.

Alfred Nobel - Alfred Bernhard Nobel (October 21, 1833, Stockholm, Sweden – December 10, 1896, Sanremo, Italy) was a Swedish chemist, engineer, innovator, armaments manufacturer and the inventor of dynamite. By the time of his death he held more than 350 patents and controlled factories and laboratories in 20 countries. William Gordon Lennox wrote that “Nobel was subject to migraines and convulsions from infancy.” Nobel had epileptic seizures as a young child, which later made him write of convulsions and agony in a poem. The foundations of the Nobel Prize were laid in 1895 when Alfred Nobel wrote his last will, leaving much of his wealth for its establishment. Since 1901, the prize has honored men and women for outstanding achievements in physics, chemistry, medicine, literature, and for work in peace.

Michelangelo - (March 6, 1475 – February 18, 1564) The sculptor of many of the most renowned sculptures of all times. Michaelangelo was a respected renaissance man only rivaled by Leonardo Da Vinci.

Leonardo Da Vinci - (April 15, 1452 – May 2, 1519) The man responsible for some of the greatest religious paintings in history Leonardo Da Vinci excelled not only in painting but in numerous other disciplines as well. He was a Tuscan polymath: architect, botanist, musician, scientist, mathematician, engineer, inventor, anatomist, painter, sculptor, and writer. His most famous work is definetely the paintings of both Mona Lisa and the Last Supper of Jesus Christ which have both been the most reproduced religious paintings of all times.

Julius Caesar - (July 13, 100 BC – March 15, 44 BC),

Edgar Allen Poe - (January 19, 1809 – October 7, 1849) Edgar Allen Poe is a member of the Romantic Movement, mostly as an author and literacy critic. He has written books and short stories and he is best known for his macabre and mysteries, he is the one who invented the Detective-Fiction genre.

Aristotle - (384 BC – 322 BC) Aristotle was a Greek philosopher writing on many different subjects including zoology, biology, ethics, government, politics, physics, metaphysics, music, poetry and theater. He was also a great teacher for Alexander the Great.

Theodore Roosevelt - 26th President of the U.S. (October 27, 1858 – January 6, 1919) Roosevelt 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.

Alfred the Great - (c. 849 – 26 October 899) Alfred the Great was king of the Anglo-Saxon kingdom of Wessex from 871 to 899.

Bud Abbott - (October 2, 1895 – April 24, 1974) Bud Abott was an American producer, comedian and actor.

Richard Burton - (November 10, 1925 – August 5, 1984)

George Frederick Handel - (Friday 23 February 1685 – Saturday 14 April 1759) was a German-born Baroque composer who is famous for his operas, oratorios and concerti grossi. Since the 1960s, with the revival of interest in baroque music, original instrument playing styles, and the prevalence of countertenors who could more accurately replicate castrato roles, interest has revived in Handel's Italian operas, and many have been recorded and performed onstage.

Charles V of Spain - Charles V (24 February 1500 – 21 September 1558) was ruler of the Holy Roman Empire from 1519 until his abdication in 1556 and also ruler of the Spanish realms from 1516 until 1556.

Pythagoras - Pythagoras was the first man to call himself a philosopher, ''lover of wisdom'' and was the most able philosopher among the Greeks. He was know as ''the father of numbers'' and greatly contributed to mathematics. It is even said that many of his ideas had directly influenced Plato. Many of his teachings were only passed down by some of his students, none of his work had seen the day and none can be sure of exactly how wise Pythagoras was. Although he had made huge contributions to both philosophy and religion in the late 6th century BC.

Hannibal - Carthaginian military commander and tactician, later also working in other professions, who is popularly credited as one of the finest commanders in history. He lived during a period of tension in the Mediterranean, when Rome (then the Roman Republic) established its supremacy over other great powers such as Carthage, Macedon, Syracuse, and the Seleucid empire. His most famous achievement was at the outbreak of the Second Punic War, when he marched an army, which included war elephants, from Iberia over the Pyrenees and the Alps into northern Italy.

Hector Berlioz - Louis Hector Berlioz (December 11, 1803 – March 8, 1869) was a French Romantic composer, best known for his compositions Symphonie fantastique and Grande Messe des morts (Requiem). Berlioz made great contributions to the modern orchestra with his Treatise on Instrumentation and by utilizing huge orchestral forces for his works, sometimes calling for over 1,000 performers.

James Madison - During his teens and early twenties, Madison complained of a voice impairment. This was a functional disability that prevented his public speaking until age 30. Madison believed he would “ have a short life due to the illness he believed was epilepsy.

Lord Byron - Baron Byron, of Rochdale in the County Palatine of Lancaster, is a title in the Peerage of England. It was created in 1643, by letters patent, for Sir John Byron, a Cavalier general and former Member of Parliament. Some biographies suggest that Lord Byron experienced epileptic seizures and in various passages he writes of symptoms reminiscent of epilepsy.

Louis XIII of France - (September 27, 1601 – May 14, 1643) ruled as King of France and Navarre from 1610 to 1643. Louis XIII ascended to the throne in 1610, at the age of eight and a half, upon the assassination of his father.

Margaux Hemingway - (February 16, 1955 – July 1, 1996) was an American model and film actress who appeared in several movies.

Martin Luther - (November 10, 1483–February 18, 1546) was a German monk, theologian, and church reformer. Luther's theology challenged the authority of the papacy by holding that the Bible is the sole source of religious authority and that all baptized Christians are a priesthood of believers. Luther had many documented illnesses, but any recurrent attacks were probably due to Ménière’s disease.

Nicolo Paganini - (October 27, 1782 – May 27, 1840) was an Italian violinist, violist, guitarist, and composer. He is widely considered to be one of, if not the greatest violinist who ever lived and it is believed to he had epilepsy.

Paul I of Russia - Pavel (Paul) I Petrovich of Russia (October 1, 1754 – March 23, 1801) was the Emperor of Russia between 1796 and 1801.

Peter Tchaikovsky - Russian composer of the Romantic era. Tchaikovsky, is believed to have had epilepsy. Pyotr began piano lessons at age five with a local woman, Mariya Palchikova within three years he read music as well as his teacher. Tchaikovsky died on November 6, 1893, nine days after the premiere of his Sixth Symphony, the Pathétique. His death has traditionally been attributed to cholera, most probably contracted through drinking contaminated water several days earlier.

Peter the Great - Peter I the Great or Pyotr Alexeyevich Romanov (9 June 1672 – 8 February 1725) Both Peter's hands and feet were small, and his shoulders narrow for his height; likewise, his head was also small for his tall body. Added to this were Peter's facial tics, and, judging by descriptions handed down, he may have suffered from petit mal, a form of epilepsy.

Robert Schumann - (June 8, 1810 – July 29, 1856) was a German composer, aesthete and influential music critic. He is one of the most famous Romantic composers of the 19th century.

Sir Walter Scott - (15 August 1771 – 21 September 1832) was a prolific Scottish historical novelist and poet popular throughout Europe during his time.

Socrates - (470 BCE–399 BCE) was a Classical Greek philosopher. He is best known for the creation of Socratic irony and the Socratic Method, or elenchus. Socrates developed the practice of a philosophical type of pedagogy, in which the teacher asks questions of the students to elicit the best answer, and fundamental insight, on the part of the student.

Truman Capote - born Truman Streckfus Persons in New Orleans, Louisiana (30 September 1924 – 25 August 1984) was an American writer whose stories, novels, plays, and non-fiction are recognized literary classics, including the novella Breakfast at Tiffany's and In Cold Blood.

Chanda Gunn - (born January 27, 1980 in Huntington Beach, California) is an American ice hockey player. She won a bronze medal at the 2006 Winter Olympics. As a female athlete with temporal lobe epilepsy, Chanda Gunn faces each day with a zest for life and the determination to live each day to its fullest. Gunn has received numerous awards, she is the first player ever to be named a finalist for both the Patty Kazmaier Award for the nation's best women's college hockey player and the Humanitarian Award for college hockey's finest citizen.

Dj Hapa - Diagnosed with epilepsy at age 17, HAPA was initially told he would not be able to attend college due to his condition. He attended UCLA on a Regents scholarship and today is the executive director of the Scratch DJ Academy.

A Prayer For Calm

2009-09-10T13:15:00.000-07:00

God be gracious to us and bless us,
And cause His face to shine upon us---Selah.
(Psalm 67:1)

Lord, we are gathered around our Standard. We are bowed before our great God who offers His peace when so many panic. You are our refuge, our chasah. Rivet that into our minds. Show us how to pause, and let it sink in. Remind us of Your power and presence when the songs in the evening change into the fearful tears of the night. Remind us of that when the shrill ring of the phone awakens us. Remind us of that when we sit down and read the morning headlines. Remind us, oh great God, that You are our refuge and strength. Remind us, even when we don't understand the why of what's happening, that we have no reason to fear, that we need not be moved, and that our future is never uncertain with You.

Author Unknown

We Have Only Today

2009-09-04T22:54:00.000-07:00

As we approach 9/11's anniversary, newly declassified photographs of the events at Ground Zero have been released.

The images bring it all back. They remind us of the thousands who said good bye to their families and friends that morning and boarded the ill-fated planes or went to work at the Pentagon and World Trade Center.

And they reminded me of something I read many years ago. Three little questions:

1) Who would you call if you learned you had only 3 minutes left to live?

2) What would you say?

3) Why are you waiting?

PRAYER: Lord, I ask You to fit my tongue with your readiness and grace. Help me tell the ones I love how much they mean to me. Help me reach out to those with whom I am in disagreement so that we may find forgiveness and peace. Guide my thoughts, intentions and words. Help me to remember that each day is a precious gift that You have made. Give me Your eternal perspective so that I can see how my time upon this earth is to be used, and how I may live it in mercy and love. Amen.

"Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin." Mother Teresa

God's Strength Is Perfect When Ours Is Gone

2009-08-05T18:00:00.000-07:00

"God does not want our deeds; God wants the love that prompts them." St. Teresa of Avila Life can be full of hardships and pain, and I have had my share the past few months. Each step of the race, each day, each hour depended upon the Lord helping me to limp through. Are you running a long, hard race right now, too? Are you exhausted by fear, sadness, or overwork? If so, I encourage you to reach out to the Lord who is there beside you. The Starter of your race is waiting to give you strength until your own strength returns. He wants to encourage you to hold on, to have faith in His bigger picture, for there is so much more to your life and the life of your child than today's struggles. Is the sun shining? Are flowers blooming? Did a friend call? Consciously look for a little blessing, no matter how small. Receive the permission to live this day the best that you can -- and know that is enough. Be assured that the storm will ebb. Your soul shall be renewed. You shall rise again, yes mother, you shall rise again. PRAYER: Dear Reader, Meet Me wherever and whenever you want. I love you. (Signed) God Before motherhood, I read the poem below as a love poem between a man and a woman. But at the moment of my son's birth, the poem became one between a mother and child. I recited it aloud as they laid my newborn in my arms right there in the labor and delivery room. This is for you and your child. Love, Theresa somewhere i have never travelled, gladly beyond
by E. E. Cummings

somewhere i have never travelled,gladly beyond any experience,your eyes have their silence: in your most frail gesture are things which enclose me, or which i cannot touch because they are too near your slightest look easily will unclose me though i have closed myself as fingers, you open always petal by petal myself as Spring opens (touching skilfully,mysteriously)her first rose or if your wish be to close me, i and my life will shut very beautifully ,suddenly, as when the heart of this flower imagines the snow carefully everywhere descending; nothing which we are to perceive in this world equals the power of your intense fragility:whose texture compels me with the color of its countries, rendering death and forever with each breathing (i do not know what it is about you that closes and opens;only something in me understands the voice of your eyes is deeper than all roses) nobody,not even the rain,has such small hands

Stigma, Prejudice, and Segregation: When The Public Tone Turns Ugly Against Persons With Disabilities

2009-06-10T05:45:00.000-07:00

There it was again in the paper this morning. The headline about special education students taking away money and resources from "normal" children. Interesting that we never see these same headlines about magnet schools or "gifted and talented" children taking away resources from "normal" children.

More and more I seem to be reading stories about children with disabilities being turned away from communities of all kinds -- including the spiritual. There was a recent story of a boy with autism whose church took out a restraining order against him so he would not be able to attend church services with them. There were stories of children in hospitals and residential facilities being denied their church's sacraments. It is all terribly hurtful and disturbing.

When the public tone towards persons with disabilities becomes ugly or unfair, we must take it to the Lord at once. He will tell us the best way to handle it. He might ask us to step forward and publicly speak out, He might ask us to volunteer to help a family in our community, He might call us in a legal direction, or He may ask us to simply pray and meditate. He can, and will, use the situation for good. He always has a plan. Our job is to listen, and to say yes to what He asks.

With God we can stay in the process, even when we encounter unjust, harsh criticism. With Him we can be strong even when we feel timid. We can be courageous. We can teach. We can be still. We can continue getting the road ready for the families that are coming behind us. For isn't that part of why we are here? Jesus came to show us the way. He left us here to help bring His people along that path.

Below is a wonderful sermon by Charles Swindoll in which I think all parents of children with special needs and illnesses can find strength. Peace and love, Theresa

Criticism
by Charles R. Swindoll

2 Timothy 1:7

Looking for a role model on how to handle criticism? It would be worth your while to check out the book of Nehemiah. On several occasions this great-hearted statesman was openly criticized, falsely accused, and grossly misunderstood. Each time he kept his cool . . . he rolled with the punch . . . he considered the source . . . he refused to get discouraged . . . he went to God in prayer . . . he kept building the wall (Nehemiah 2:19-20; 4:1-5).

One of the occupational hazards of being a leader is receiving criticism (not all of it constructive, by the way). In the face of that kind of heat, there's a strong temptation to "go under," "throw in the towel," "bail out." Many have faded out of leadership because of intense criticism. I firmly believe that the leader who does anything that is different or worthwhile or visionary can count on criticism.

Along this line, I appreciate the remarks made by the fiery president of a past generation, Theodore Roosevelt:

It is not the critic who counts; not the man who points out how the strong man stumbled or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena; whose face is marred by dust and sweat and blood; who strives valiantly; who errs, and comes short again and again, because there is no effort without error and shortcoming; who does actually try to do the deed; who knows the great enthusiasm, the great devotion and spends himself in a worthy cause; who, at the worst, if he fails, at least fails while daring greatly.

Far better is it to dare mighty things, to win glorious triumphs even though checkered by failure, than to rank with those poor spirits who neither enjoy nor suffer much because they live in the gray twilight that knows neither victory nor defeat.

To those words I add a resounding amen.

A sense of humor is of paramount importance to the leader. Many of God's servants are simply too serious! There are at least two tests we face that determine the extent of our sense of humor:

the ability to laugh at ourselves

the ability to take criticism

Believe me, no leader can continue effectively if he or she fails these tests! Equally important, of course, is the ability to sift from any criticism that which is true, that which is fact. We are foolish if we respond angrily to every criticism. Who knows, God may be using those words to teach us some essential lessons, painful though they may be.

Isn't this what Proverbs 27:5-6 is saying?

Better is open rebuke
Than love that is concealed.
Faithful are the wounds of a friend,
But deceitful are the kisses of an enemy.

And let me call to your attention the word friend in these verses. Friendship is not threatened but strengthened by honest criticism. But---when you are criticized by one who hardly knows you, filter out what is fact . . . and ignore the rest!

Nehemiah did that . . . and he got the wall built.

"The Birth" by Caryll Houselander, 1953

2009-05-01T18:07:00.000-07:00

“The Birth”
by Caryll Houselander 1953

There was always the Crowd. Even when he lay folded in the darkness of Mary’s womb, she carried him into the crowded city of Bethlehem to be born.

There was a loud voice in the streets surrounding the stable. The clinking of glasses, the shouts, the greeting of friends, the tramping of feet and clatter of hoofs, laughter and snatches of song.

Only his Mother possessed silence. And in her silence under the noise of the crowd, she heard the sound of a stream flowing underground, and breaking through darkness to water the earth. And she heard the little snap of a bursting seed, and the sound of a bud breaking. She heard the sound of the waters of birth.

Then the sound of water and opening buds and seed pushing into the light became the thin cry of the newly born, and the thin cry was the Word.

She, his Mother, always sought for him in the crowd. It was in the crowd coming home from Jerusalem that she lost, and sought her son for the first time. And it was as one of the crowd, seeking him again in the city she heard him say - “They who do the will of my Father in Heaven are my brother and sister and mother!”

There was always the crowd, thronging the mountain side and the sea shore and the wilderness, to hear the word. And she was always there as one of the crowd, she, who had heard the first cry, and taught the Word his first word, and stored all his words in her heart. Now the Lord spoke of living streams in which those who are dead should be born again, and the single seed cast into the earth that should fill the fields for the harvesting with wheat for living bread.

Some of them questioned him: “How can these things be?” “This is a hard saying and how shall we return to our mother’s womb and be born again?” And she remembered that she too had said “How can this thing be?”

And then that crowded night in the city of Bethlehem. Would all men spark from the seed of light that had flowered from her?

There was the crowd who threw their garments under his feet, children thronging his way with palms in their hands, to greet his entry into Jerusalem when he came to die, and then, the crowd outside the judgment hall, crying aloud for his blood - “Crucify! Crucify!” and those who hustled each other, and pushed their way in the narrow street when they led him by on the way to Golgotha. And always Mary his Mother, following, seeking her lost child in the crowd.

When he died on the Cross the crowds were there, climbing the hill, as they did when first he came from Nazareth, to utter the word of his Father’s love in the broad speech of a Nazarene. But now they came to deride, to mock at him and to curse, they came to silence the Word!

Mary, his Mother, stood at the foot of the Cross. She heard the seed that had shone in her womb falling into the ground, and the sound of a great wind sweeping the red harvests from end to end of the world.

And she heard the sound of his blood, that was hers, like the sound of a great sea flowing in waves of light over the world’s darkness, flowing down the hillside, through the holy city, and all the cities, all over the world till the end of time, flooding the souls of men with the waters of life. Mary, the Mother of God, looked from the night to a million million dawns, whose rising suns were a million million Hosts.

And she saw the crowds, coming again to the mountain side from the ends of the earth, and the end of time.

She saw the cities of all the world, and the glory of them from the mountain where he had died.

And she sought for her son who was lost, and found him there in the crowd. He was there because exiles were there, those who fled from murder and had nowhere to lay their heads. He was there, because kings were there, whose crowns were crowns of thorn. He was there, because priests were there, who were there to be sacrificed. He was there, because those who were poor were there, and they were clothed in the iridescence of flowers in dew reflecting the rising sun. He was there because children were there, who looked at her with her child’s shadowless eyes.

She heard the breaking of the waters of birth.

And then the Word was silent. The sound of the great wind and the sea became the silence of the Word. She heard only the sound of the little stream that broke from his side.

But mankind born again was laid in her arms, in the body of her dead child.

Susan Boyle: Turning Disability Into Ability

2009-04-23T10:52:00.000-07:00

Susan Boyle is receiving a lot of attention after her performance on the television show Britain's Got Talent. Her appearance and her personality caused the judges and the audience members to dismiss her, to snicker, and to laugh at her. But then she started singing. And the rest, as they say, is history.

Ms. Boyle's Cinderella story has captured the world's attention for many reasons. Last week, she was even the subject of Cardinal Sean O'Malley's homily at the Boston Catholic Women's Conference in Massachusetts. We are captivated by the extraordinary story of this gentle woman, but many don't know that Susan Boyle has had a lifelong history with disabilities.

Ms. Boyle has learning disabilities as a result of oxygen deprivation at birth. In a recent interview with CBS she talked about being bullied, teased and abused for being "slow. " Though the scars remain today, she added, "The ones who made fun of me are now nice to me, so I may have won them round."

Susan Boyle has clearly won us all round. Her performance was a testimony to the human spirit as much as it was a display of her beautiful talent. This never-been-kissed woman whom many considered a "throw-away" wants very much to highlight her disabilities.

"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."

To quote Britain's Got Talent judge Piers Morgan, "Susan, you have the voice of an angel."

Passivity

2009-04-18T05:52:00.000-07:00

I just received "Getting Involved, Part 1" (below) from Insight For Living. It came to me after a morning of prayer and meditation on a hurtful situation we encountered in a church where we live. It resonated with me, and I was certain it would resonate with some of you. I shall publish Part 2 when I receive it tomorrow.

Friends, we must always remember that God is holding us in the palms of His hands, even when our earthly brothers and sisters turn us away. We must not let these hurtful experiences, especially those at the hands of fellow Christians, take us away from the One who is our Father, our God.

The Lord is our balm. He will always be our Good Samaritan.

Getting Involved, Part One
by Charles R. Swindoll

Luke 10:30-37

Kitty Genovese was brutally attacked as she returned to her apartment late one night. She screamed and shrieked as she fought for her life . . . yelling until she was hoarse . . . for thirty minutes . . . as she was beaten and abused. Thirty-eight people watched the half-hour episode from their windows with rapt fascination. Not one so much as walked over to the telephone and called the police. Kitty died that night as thirty-eight witnesses stared in silence.

Andrew Mormille's experience was similar. Riding on a subway, the seventeen-year-old youth was quietly minding his own business when he was stabbed repeatedly in the stomach by attackers. Eleven riders watched the stabbing, but none came to assist the young man. Even after the thugs had fled and the train had pulled out of the station, as he lay in a pool of his own blood, not one of the eleven came to his side.

Less dramatic but equally shocking was the ordeal of Eleanor Bradley. While shopping on Fifth Avenue in busy Manhattan, this lady tripped and broke her leg. Dazed, anguished, and in shock, she called out for help. Not for two minutes. Not for twenty minutes. But forty minutes, as shoppers and business executives, students and merchants walked around her and stepped over her, completely ignoring her cries. After literally hundreds had passed by, a cab driver finally pulled over, hauled her into his taxi, and took her to a local hospital.

I heard of an experiment a small band of seminary students carried out on fellow members of their class some time ago. I know it is true because I later spoke with one of the men involved. The class was given an assignment on Luke 10:30-37, the familiar account of the Good Samaritan. The assignment was due the next day. Most of the men in that class traveled along the same pathway leading to the classroom the next morning. One of the seminarians in the experiment wore old, torn clothing, disguised himself as though he had been beaten and bruised, and placed himself along the path, clearly in view of all the young students making their way back to class. With their assignments neatly written, carefully documented, and tucked under their arms, not one seminarian so much as paused to come to his assistance or wipe the catsup off his neck and chest.

Intellectually, the assignment on love and caring was completed. But personally? Well, you decide.

What's happening? Why the passivity? How can we explain the gross lack of involvement in our world today and especially among Christians? We'll talk about that tomorrow. For now, go out on a limb: ask God to let you help someone in urgent distress in the immediate future. Be sensitive . . . He's going to answer your request! And take extra time today to thank God for the constant protection you enjoy from Him, allowing you to reach out confidently to others (read Psalm 121:7-8). Be ready!

Excerpted from Come Before Winter and Share My Hope, Copyright © 1985, 1994 by Charles R. Swindoll, Inc. All rights reserved worldwide. Used by permission.

Called To Be Blessings

2009-04-06T05:42:00.000-07:00

Originally printed in 2005 in Washington DC:

CALLED TO BE BLESSINGS, by Theresa Lindner

Did you hear the one about the four men who lowered their handicapped friend through the roof to Jesus who was preaching God’s Word below?

We find this inspiring story of a service being made handicapped accessible in Mark 2:1-12. Jesus was preaching in a house, and a crowd gathered outside so thick that there was no way this paralyzed man could gain access to Christ. So the man’s friends carried him up to the roof, tore a hole in it, and lowered him down to Jesus below. Their tenacious commitment to their friend, and their determination to gain him access, moved Jesus to care for the paralytic man (Mark 2:5).

Since my 8 year old son became ill two years ago with a progressive neurological disease, my family and I have learned a lot about accessibility, inclusion, and barriers. There are barriers of stone, prejudice, fear, and misunderstanding. Physical barriers such as a flight of stairs or a curb can keep a wheelchair-bound person from entering a building or participating in a church service. But attitudinal barriers deny a person access to the community of the heart and soul. The good and faithful servants of Blessed Sacrament have sought to integrate persons with differences into every aspect of Church and Sacramental life, and have reached out to all saying, “You belong”. The Catholic Church teaches us through St. Paul that “though we are many we are one body in Christ, and individually we are all members of one another.” Blessed Sacrament has re-configured the church, re-imagined how to do Liturgy and the Sacraments, and re-shaped the role each person plays as a member of the Body. But still too many of our disabled and sick brothers and sisters and their families remain at home on Sunday mornings. Recent census figures show that about 1 in 5 Americans have some kind of disability, and 1 in 10 have a severe disability. There are millions of Catholics living in the United States with a disability, and yet if we look around at our churches on Sunday mornings, we see an amazing lack of disabled people at Mass. The need for the ill and disabled to hear God’s Word, receive the Eucharist, and commune with other believers at Mass each week is critical, for He alone truly is our strength. Our daily trials are tests of our faith, character and endurance. If anyone needs to hear a Homily each week and receive the Eucharist, it is we who are struggling to keep our minds filled with hope and our attitudes filled with faith.

God invites us all to His banquet table in Luke 14:12-15. The idea of inclusion is not new. Jesus teaches us by example throughout the Bible that we are to accept persons with differences as they are, and to see people’s hearts: “Man looks at the outward appearance, but the Lord looks at the heart” (1Sam 16:7). The value of each person is intrinsic and our value in God’s eyes is unchanging. We have watched the Pope soldier on despite increasing debilitation due to his illness. And at a Symposium on the Dignity of the Person with Mental Handicaps held at the Vatican last January, the Pope wrote, “The quality of a life of a community is measured by the care given to the weakest, especially the disabled.” The love of God and the love of one other is inseperable.

I think when we feel compassion for another person it is God’s way of telling us to be a blessing to that person. Being a blessing might mean holding a door open, sending a note, offering a smile, or helping someone get to Mass on Sunday. Being a blessing might mean looking straight ahead when the person beside us at Mass isn’t following “the rules”, or mumbles or calls out while the rest of us are in quiet prayer. Maybe our blessing could be saying a “Hail Mary” privately for someone unable to sit still, or experiencing body jerks during Mass. In Genesis (1:31) we read that God saw all the things that he had made, and they were very good. God didn’t say they were perfect. He said they were good. No one is perfect: we all have flaws, we all have differences. We must keep our hearts of compassion open, and be obedient to what God calls us to do, and whom He calls us to be.

In Matthew 25:31-45, the parable of the Last Judgment, we are told, “Inasmuch as you have done it for the least of My brothers, you have done it unto Me.” As Catholics our destiny is to serve others in His name. Compassionate outreach to the ill and disabled is a very special service to Christ. No one can make this journey alone. We all need a church family to encourage us and help us along the way. Consider a flock of geese flying in a V formation during migration. When we look closely at them we see that one goose flies in the lead, acting as a windbreak for the others in the flock until he grows tired and falls back into the lines of the V. Immediately another goose will fly up to the lead position, battling the wind that will soon tire him. And all of that honking we hear as they fly overhead? Those are the sounds of the geese in the back of the formation, shouting a kind of encouragement to the lead goose and to one another.

So perhaps the next time we see a mother struggling with a spirited child during Mass, or somebody flies off the handle at us, or we are seated next to someone who is weeping, we should consider that God has probably placed them near us for a reason. Maybe He is asking us to fly to the lead position for a moment. When God puts love in our hearts for another person we must act on it. We must say yes. We must be willing to be inconvenienced or interrupted now and then. We must be willing to be someone’s windbreak when called. For the person God has placed on our heart needs what we have to give. And in giving, God will be creating a good work in us, too. God puts compassion in our hearts as much for us, as for the person to whom we are reaching out. Write to a special-needs family you know who doesn’t attend church, and invite them to Mass at Blessed Sacrament. Call your elderly neighbor and tell them you want to drive them to our wonderful 10:15 Mass so they can enjoy the beautiful music. Invite the special education student in your child’s class to their birthday party. God’s Love empowers even the most timid among us to become blessings and champions to His purpose. Jesus came to show us the way, to give us eternal life. He left us here to be used by Him to help accomplish that purpose.

This is My commandment, that you love one another as I have loved you. – John 15:1

Theresa Lindner is a member of the Blessed Sacrament Disabilities Ministry.

Marathoners Donate Their Race Medals To Children With Life-Threatening Conditions

2009-02-18T18:05:00.000-08:00

Below is a wonderful story about donated marathon medals being passed out to children with life-threatening disorders (Medals 4 Mettle). There are some amazing angels this side of Heaven.

Peace, Theresa

Donated medals inspire sick kids to reach finish line
Medals 4 Mettle recognizes effort in race with no prizes

By Pamela LeBlanc
AMERICAN-STATESMAN STAFF
Saturday, February 07, 2009

Two runners slip into a room at Dell Children's Medical Center, where a little girl dressed in purple rests on a bed draped with a Minnie Mouse blanket.

"Have you ever heard of a marathon?" Christine Yarosh asks 5-year-old Isabella Duran.

Isabella nods, eyes wide. "It's a really long race," Yarosh says.

She explains that runners spend long hours preparing for a marathon. They run in cold. They run at night. They run, sometimes, when they don't want to. Then, after months of training, they run 26.2 miles, all at once. At the finish line, someone hands them a finisher's medal as a way to remember how hard they worked.

"It's like what you do," Yarosh says, smiling at Isabella, who was diagnosed with a form of leukemia last October. "And we want to recognize how much work you're doing to try to get well."

Yarosh's partner, Rick Slawsky, reaches into a canvas satchel, fishing around until he finds what he is looking for — a saucer-sized medal from the Walt Disney World Marathon in Florida. It's shaped like Mickey Mouse, with oversized ears to match Isabella's blanket. Yarosh carefully places the medal around the little girl's neck. Isabella grins, then flashes the medal at her mom.

Every few months, Yarosh, 44, and Slawsky, 55, head to this hospital, where they bestow donated finisher's medals on chronically sick kids. So far, they've given away more than 100 through the Austin branch of the nonprofit organization Medals 4 Mettle.

Ten or 20 medals a week find their way to the couple. Some are mailed, some are dropped by their home, and others are collected from a drop box at the RunTex store on Riverside Drive. They come from races far and wide, including the Country Music Marathon in Nashville, the Philadelphia Marathon, the Chicago Marathon and the Air Force Marathon.

"This running community in Austin is so amazing," Yarosh says. "It's really meaningful that people give up medals. It's the culmination of week after week after week of training, and they give it to someone who doesn't get a prize."

Some medals are donated by first-time marathoners. One came from a cancer survivor who is also a marathon runner and triathlete. A division winner in the 2008 San Francisco Marathon even donated her medal to the Austin group.

In all, more than 30 chapters of Medals 4 Mettle exist around the United States, Mexico and Canada. Dr. Steven Isenberg, a marathon runner and ear, nose and throat physician, founded the organization in Indianapolis in 2005.

Isenberg estimates the group has give away more than 7,000 medals so far. Last week, Olympian Bill Rodgers, four-time winner of both the Boston and New York City marathons, sent more than 30 autographed medals, unsolicited, to Isenberg to give away through the program.

"Kids really look to others for reinforcement and encouragement," Isenberg says. "When somebody gives them something they've spent lot of time effort and energy to earn, it transmits that good will and support in a unique way \u2026 It gives them courage to have an IV started and get treatments and live with all the bad things disease brings."

The Austin chapter, started by Slawsky and Yarosh, was one of the first outside Indianapolis. Isenberg says Slawsky and Yarosh have been key in setting up new chapters around the country. "That's our mission — to spread the collective support of human courage throughout the country, throughout the world," Isenberg says.

In Austin, volunteers attach special ribbons to the medals before handing them out. Yarosh and Slawsky don't spend long with each child, dropping in long enough to explain why dealing with a chronic illness is like running a marathon. "Later, when we're gone, they have it as a reminder to get up and do something that's difficult and painful," Yarosh says.

Sometimes, it's not easy to make the delivery. Some of the young patients are getting chemotherapy for cancer; others have respiratory problems. "When we leave, I just have to take a few minutes and cry," Yarosh says.

Among this day's 20 or so recipients at the Dell hospital are Lee McClenon, a 17-year-old junior at LBJ Liberal Arts and Sciences magnet school who misses playing lacrosse with her team. She was diagnosed in March 2006 with cancer in the muscle around her jaw. Eighteen months after doctors thought she had recovered, the cancer came back. But today is her last round of chemotherapy, and she's excited.

"I'd be happy if I could run half a mile," McClenon says, as Yarosh explains the significance of the medal she hangs around the teenager's neck.

"On days when it's really hard, hold on to that and keep on pushing," Yarosh tells her.

Down the hall, Yarosh and Slawsky visit a Round Rock High School football player being treated for bone cancer. A few doors later, they meet a young power lifter from Del Valle High School who has asthma.

"People who run these races realize people like you are running their own race," Slawsky tells them.

Kisten Inness , 7, promptly hangs the medal she receives around the neck of her stuffed animal.

"It's just a little something to show how hard you're working," Yarosh says.

When they stop by the room where 6-year-old Kai Davidson is staying, it's obvious he wishes he wasn't at the hospital.

"How are you doing today?," Slawsky asks.

"Kind of good," Kai says quietly.

When Slawsky hands him a medal, he looks at it carefully. "That's to show you're doing a good job," he says.

As they leave the room, Kai is still staring at the heavy medal in his hand.

2009 World Day of the Sick Focuses on Sick Children

2009-02-15T07:42:00.000-08:00

On February 11, 2009, the Catholic Church celebrated her 17th World Day of the Sick. This year the message focused on sick and suffering children.

There is much we can take from this important message regardless of our church affiliations. "Human life is beautiful and should be lived in fullness even when it is weak and shrouded by the mystery of suffering," wrote the Pope.

God never abandons His children in affliction, but always provides for us so that we may deal with the difficulties of our lives. Perhaps we who have not received "cordial cooperation" in our spiritual communities might be able to use this Papal letter as a foundation upon which to build a bridge to a "civilisation of love" (cf.Salvifici doloris, n. 30).

The following paragraph in particular spoke to my heart:

"Since a sick child belongs to a family that shares his or her suffering often with great hardship and difficulties, Christian communities cannot but also make themselves responsible for helping family units that are afflicted by the illness of a son or daughter. Following the example of the "Good Samaritan", one should bend down in front of people who are so sorely troubled and offer them the support of practical solidarity. In this way, the acceptance and sharing of suffering is translated into a useful support to the families of sick children, creating within them a climate of serenity and hope, and making them feel surrounded by a wider family of brothers and sisters in Christ. The compassion of Jesus for the weeping of the widow of Nain (cf. Lk 7:12-17) and for the imploring prayer of Jairus (cf. Lk 8:41-56) constitute, amongst others, certain useful points of reference by which to learn to share in the moments of physical and moral tribulation of so many afflicted families. All of this presupposes a disinterested and generous love, a reflection and sign of the merciful love of God who never abandons his children in affliction, but always provides them with admirable resources of the heart and intelligence, so that they can adequately address the difficulties of life."

VATICAN CITY - 11 February 2009
Pope Benedict's message for World Day of the Sick

Dear Brothers and Sisters,

The World Day of the Sick, which will be celebrated on 11 February of this year, the liturgical memorial of the Blessed Virgin Mary of Lourdes, will see the diocesan communities meet with their bishops in moments of prayer, in order to reflect and to decide upon initiatives of sensitisation connected with the reality of suffering. The Pauline Year that we are celebrating offers a propitious opportunity to stop and reflect with the apostle Paul on the fact that "just as the sufferings of Christ overflow into our lives; so too does the encouragement we receive through Christ" (2 Cor 1:5). The spiritual link with Lourdes, in addition, calls to mind the maternal solicitude of the Mother of Jesus for the brethren of her Son "who still journey on earth surrounded by dangers and difficulties, until they are led into the happiness of their true home" (Lumen gentium, n. 62).

This year we direct our attention particularly to children, the weakest and most defenceless creatures, and, amongst them, to the sick and suffering children. There are little human beings who carry in their bodies the consequences of illnesses which have made them invalids and others who fight against diseases that are now incurable despite the progress of medicine and the care of qualified researchers and health-care professionals. There are children wounded in their bodies and souls as a consequence of conflicts and wars, and other innocent victims of the hatred of senseless adults. There are 'street' children, deprived of the warmth of a family and abandoned to themselves, and minors profaned by abject people who violate their innocence, provoking in them a psychological wound that will mark them for the rest of their lives. And we cannot forget the incalculable number of young people who die because of thirst, hunger, lack of health care, and the little exiles and refugees from their own lands, with their parents, who are in search of better conditions of life. From all these children arises a silent cry of pain that calls on our conscience as men and believers.

The Christian community, which cannot remain indifferent to such dramatic situations, perceives the impelling duty to intervene. The Church, indeed, as I wrote in the encyclical Deus caritas est, "is God's family in the world. In this family no one ought to go without the necessities of life" (n. 25, b). I thus hope that the World Day of the Sick will also offer an opportunity to parish and diocesan communities to become increasingly aware that they are "God's family", and will encourage them to make the love of the Lord, who asks that "within the ecclesial family no member should suffer through being in need" (ibid.), perceivable in villages, neighbourhoods and cities. Witness to charity is a part of the life itself of every Christian community. And from the outset the Church translated Gospel principles into concrete actions, as we can read in the Acts of the Apostles. Today, given the changed conditions of health care, the need is perceived for closer cooperation between health-care workers who work in various health-care institutions and the ecclesial communities present in local areas. From this perspective, all the value is demonstrated of an institution that is connected with the Holy See, the "Bambino Gesù" Children's Hospital, which this year celebrates its 140 years of existence.

But there is more. Since a sick child belongs to a family that shares his or her suffering often with great hardship and difficulties, Christian communities cannot but also make themselves responsible for helping family units that are afflicted by the illness of a son or daughter. Following the example of the "Good Samaritan", one should bend down in front of people who are so sorely troubled and offer them the support of practical solidarity. In this way, the acceptance and sharing of suffering is translated into a useful support to the families of sick children, creating within them a climate of serenity and hope, and making them feel surrounded by a wider family of brothers and sisters in Christ. The compassion of Jesus for the weeping of the widow of Nain (cf. Lk 7:12-17) and for the imploring prayer of Jairus (cf. Lk 8:41-56) constitute, amongst others, certain useful points of reference by which to learn to share in the moments of physical and moral tribulation of so many afflicted families. All of this presupposes a disinterested and generous love, a reflection and sign of the merciful love of God who never abandons his children in affliction, but always provides them with admirable resources of the heart and intelligence, so that they can adequately address the difficulties of life.

The daily dedication and tireless commitment to the service of sick children constitute an eloquent testimony of love for human life, in particular for the life of those who are weak and who are in everything and for everything dependent on others. It is, indeed, necessary to affirm with vigour the absolute and supreme dignity of every human life. The teaching that the Church proclaims incessantly does not change with the passing of time: human life is beautiful and should be lived in fullness even when it is weak and shrouded by the mystery of suffering. It is to Jesus that we must direct our gaze: in dying on the cross he wanted to share the pain of all humanity. In his suffering for love we see a supreme co-participation in the sufferings of sick children and their parents. My venerable predecessor John Paul II, who offered a shining example of the patient acceptance of suffering, especially at the sunset of his life, wrote: "on this Cross is the 'Redeemer of man', the Man of Sorrows, who has taken upon himself the physical and moral sufferings of the people of all times, so that in love they may find the salvific meaning of their sorrow and valid answers to all of their questions" (Salvifici doloris, n. 31) .

I wish here to express my appreciation and encouragement of the international and national organisations that provide care to sick children, especially in poor countries, and with generosity and self-denial offer their contribution to assure that such children have adequate and loving care. At the same time I address a sorrowful appeal to the leaders of nations to strengthen laws and measures in favour of sick children and their families. Always, but even more when the lives of children are at stake, the Church, for her part, makes herself ready to offer her cordial cooperation, with the intention of transforming the whole of human civilisation into a "civilisation of love" (cf. Salvifici doloris, n. 30).

To end, I would like to express my spiritual nearness to all of you, dear brothers and sisters, who suffer from an illness. I address an affectionate greeting to those who help you: to bishops, to priests, to consecrated men and women, to health-care workers, to volunteers and to all those who dedicate themselves with love to treating and alleviating the sufferings of those who have to face up to illness. A special greeting for you, dear sick and suffering children: the Pope embraces you with fatherly love, together with your parents and relatives; he assures you that you are especially remembered in his prayers, inviting you to trust in the maternal help of the Immaculate Virgin Mary, who last Christmas we once again contemplated while she held in her arms the Son of God made child. Invoking upon you and every sick person the protection of the Holy Virgin, Health of the Sick, to all of you from my heart I impart a special Apostolic Blessing.

From the Vatican, 2 February 2009
Benedictus P.P. XVI

Source: Irish Catholic Media Office

© Independent Catholic News 2009

Angels Around Us

2009-01-25T19:14:00.000-08:00

There are days we face hardships, pain, and even scorn; it can be difficult to find meaning or peace. But God’s Word tells us that angels have been sent to guard and protect us. There are hundreds of references in the Old and New Testaments to these beings who were created by God to be His helpers in the work of salvation.

The word “angel” means messenger. The Archangel Gabriel announced the births of John the Baptist and Jesus. The choirs of angels announced Jesus’ birth to shepherds near Bethlehem. In the Old Testament, the "angel of the Lord" presented the will of God to the holy Patriarchs.

I believe God also sends “earth angels” into our lives to be His messengers and bringers of hope in difficult times. They are His voice saying to us, “I am here. You are not alone. I will help you.”

Do you see “angels” in your lives? They may be in the form of doctors, nurses, family members, or friends. They may be the elderly man who smiles at you in the food store, or the woman at the ice cream stand who patiently takes your child’s order. Maybe your angel is the social worker at the hospital who helped you with the government forms, or the woman at church whom you did not know who sent you an email greeting.

Each of these people are earth angels who have been sent to give encouragement, hope, and help.

The Bible says that love is kindness in action. We need not look far to find those in need. When Jesus delivered His Sermon on the Mount, He lifted up the quiet, the meek, the lowly, the poor in spirit, and blessed them, calling the rest of us to do the same. Being an earth angel is one of the most God-like things we can do.

So pay a local teenager to shovel the sidewalk of your elderly neighbor's home. Leave your change in the soda machine for the next person. Say hello to the special needs man collecting carts in the grocery store lot. Mother Teresa said, "If you can't feed a hundred people, then feed just one." We are all capable of lifting up at least one person in loving kindness each day.

PRAYER: Heavenly Father, thank You for Your angels who guard and protect us. Thank you for sending me Your “earth angels” when I have needed them. Help me to give to others as they have given to me. Help me to remember that a full measure of life is in pouring it out freely for others. Amen.

A little girl was outside on the street in a thin dress without a coat in the middle of winter. Her mother was asking passers-by for money. Angry I asked God, “Why do You permit this? Why don’t You do something about it?”

To this God replied, “I did do something about it. I sent YOU.”

Love,

Theresa

Hearing The Good News From The "Least" Among Us

2008-12-25T05:35:00.000-08:00

I have a wonderful Christmas story to share this year.

A cognitively impaired young man wanted to be in a children's play at a local church. The organizers and the other children in the play didn't want to include him because he was a little too old and they "knew he would mess up."

The annual Christmas pageant was the church's big event of the year, and the church had become known in the area for their portrayal of the Nativity story. So it was with great hesitation that they let this young man participate. They decided to make him the Innkeeper so he would only have to stand in one place and say one line: "There is no room at the Inn."

The night of the play came, and the church's auditorium was filled. The moment came when Mary and Joseph knocked on the door of the Inn. The young man with special needs answered the door as he had been instructed, stood in the spot as he had been told, and recited his line. "There is no room at the Inn," he said boldly and clearly.

Mary and Joseph turned to walk away. The young man saw that Mary was weeping on Joseph's shoulder. He jumped out of his spot and ran to them.

"Wait! You can have my room," he said.

Some in the play and in the audience thought the play had been ruined that night. But others knew better.

May the peace of our Lord be with you this day. Love, Theresa

Inviting John The Baptist To Christmas This Year

2008-12-12T09:44:00.000-08:00

It is the Season of Advent for those of us in the Christian Church. The word 'advent' is Latin for 'a coming or arrival'. Advent in the Church is a season of preparation and rejoicing -- we are waiting for the arrival of the Christ Child on Christmas Day.

I cannot think about Christmas this year without thinking about John the Baptist. He is one of the people we most closely associate with Advent, but not with Christmas. Though he is mentioned in all four Gospels in the Bible, it is his place in the Gospel of Mark which is of particular interest to me this day.

In Mark there is no Christmas story. There are no shepherds, no star in the east, no wise men, no manger. Instead, there is a wild man named John who eats Locusts, dresses in animal skins, and lives in the desert (a place of great significance throughout the Old and New Testaments).

The cry of John the Baptist is one of repentance, which means change. He challenges us, warns us, to awaken our most contrite and vulnerable parts. He points the way toward healing and wholeness, toward the world of the heart.

Our children, like John the Baptist, are beautiful reminders that Christmas is not all light and fluff. Simply by being, they crack a hole in the veneer of the glitzy, happy-only holiday that has become Christmas. They remind us that it is a Season of repentance and change, of deepening our spiritual lives, of putting love front and central in our lives. And they remind us that all of our days should begin and end with John’s cry in the wilderness to prepare the way of the Lord.

"As it is written in the book of the words of Isaiah the prophet, saying, The voice of one crying in the wilderness, Prepare ye the way of the Lord, make his paths straight. Every valley shall be filled, and every mountain and hill shall be brought low; and the crooked shall be made straight, and the rough ways shall be made smooth." Luke 3:4-5

PRAYER: Lord, we know that You are our hope for peace on earth, and for peace in the heart. We thank You for being newly born into our world again this Christmas. Help us to prepare a way for You each day of our lives. Amen.

Always, Theresa

May Christ be newborn in your heart this Christmas

Extending Mercy To Those Who Trespass Against Us

2008-11-25T13:05:00.000-08:00

Humans are meant to react to hurt by wanting to do something about it. When our hand gets burned by a flame, we quickly pull it away to safety. When we break a bone, we keep the injury still. When we have a laceration we clean and bandage it. Emotional wounds, however, can present more of a problem.

When my child is insulted, I feel angry. When someone excludes him I feel helpless and sad. When someone I trust lies, I feel betrayed. I am tempted to do something about it. I want to avenge the wrong. I want to correct the injustice and make sure it does not happen to someone else.

But that is not necessarily the course God wants me to take, and it is not necessarily the path by which healing will be brought forth.

God knows and understands my emotional pain and He does not ask me to deny it. He asks me instead to let it pass into His hands. He is my Caretaker and He shall spread His healing balm over my wounds and the wounds of my child. He brings us restoration according to His Will, His Way, and in His Time.

When God calls us to stand up to our offenders, we must do so with courage and faith. When anointed, we are empowered to serve as His apostles, evangelists, intercessors, and servants. When God calls us to quietly absolve our offenders, we must do so with the same courage and faith.

Last Sunday was the Feast of Christ the King in the Catholic Church. The Gospel Reading was from Matthew 25:31-46 (what you did/did not do for one of these least ones, you did/did not do for me). It reminded me that when my child is excluded, Christ is excluded. When my child is mocked, Christ is mocked. When I am betrayed, Christ is betrayed.

And when I do not show mercy to another, I do not show mercy to Him.

The only true justice for injury is His. And whether we are called to publicly stand or quietly exculpate, there is no healing except in showing mercy and forgiveness. To submit to His mercy and all it asks of us is to submit to opening our eyes to see things we might otherwise have missed. It is to realize that when we ask our Savior the question, "Lord, when did we see You?" Jesus will answer, "When not?"

PRAYER: Heavenly Father, help me acknowledge my feelings when I am hurt and let them flow into You. Help me to be compassionate and merciful in the disappointments and unfairness of life, especially in the thoughtlessness of others, in the insincerity of those I trusted, and in the unfaithfulness of those on whom I relied.

Always, Theresa

I Am The Disabled Child, Author Unknown

2008-11-21T20:26:00.000-08:00

I am the child who cannot talk.You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty to me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs,or comments about the world around me. I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself. I do not give you understanding as you know it. What I give you is so much more valuable...I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again! I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,y our healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick. What I do know is infinite joy in the simple things. I am not burdened as you are with the strifes and conflicts or a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child.

I am your teacher.

If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I give you my innocent trust, my dependency upon you. I teach you respect for others and their uniqueness. I teach you about the sanctity of life. I teach you about how very precious life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all, I teach you Hope and Faith.

I am the Disabled Child
~Author Unknown~

All Are Invited To The Table Of Plenty

2008-11-11T12:56:00.000-08:00

I've recently been encountering the understanding gap in places I would not expect to find it -- a house of worship and a religious school yard.

We moms of children with special needs encounter the understanding gap more than we care to say. Sometimes it can seem that people just don't get it, other times it seems they don't want to get it. This can be a great source of pain and weariness: it is tiring to educate the whole world, and frankly, it is neither possible, nor our job to do so. Yet there are times when we are called to stand up, and to declare the dignity of people with special needs. "Disability is not a mistake! Disability is not a divine punishment! It is not something from which one needs to be healed! Disability is part of God's plan!"

In our current culture that admires and seeks to attain physical perfection and worldly success, we and the Church must protect the "less than perfect", the defenseless, the vulnerable, the marginalized, the poor. All human beings are created in the image of God, having dignity, value and intention. “The Lord said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord?” (Exodus 4:11).

Disabled People are created perfectly in His image. Each of us is made "so that the work of God might be displayed."

“As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned", said Jesus, "but this happened so that the work of God might be displayed in his life” (John 9:1-3).

Jesus Christ showed us how to treat the sick, poor, marginalized and disabled: ”Then Jesus said to his host, "When you give a luncheon or dinner, do not invite your friends, your brothers or relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous" (Luke 14:12-14).

The poor, the crippled, the lame, and the blind are not on the "invited lists" as they should be. Today, I am sifting through some "un-invited list" hurts, and lifting them up to the Lord. As I work to focus my thoughts on the wonderful priests, nuns, lay people, and school communities God has placed on our family's path, I see that I must also acknowledge the pain and rejection we have experienced by the others.

As a daughter of the King, I shall put on the armor of God and stand tall. I, we, our children have the right to say who and what we are. "We are children of God, wonderfully and fearfully made!"

PRAYER: Heavenly Father, help me remember that these "understanding gap" experiences, though painful, are opportunities to rest in You, to learn, and to teach. Help me to know how to conduct myself with dignity when I or my child is being wronged. Help me to know when You want me to step forward and speak out. Thank you for sitting with me today and listening to my mother's heart cries. With You I can be still. With You I can be. With You I am always on the "Invited List."

Love, Theresa

http://www.youtube.com/watch?v=8pz0EhFEH-U -- If We Are The Body

Receiving The Grace To Go On

2008-10-27T13:07:00.000-07:00

I live in New England where winter is long. It is October, and the leaves have been turning and falling from the trees for several weeks. Yet I hesitated getting out our winter coats; it still felt warm.

Last week, winter bit down on us for the first time this year. Frost on the grass and ice on the car made me see that winter was indeed, inevitable.

Though I knew that winter was coming, the inevitable was not real for me until it had happened.

I think it is similar for those of us who have a child with a poor prognosis for survival. We know that their passing is going to happen, but we can still be shocked when it does. It will be, or has been, the most difficult and painful experience of our lives. Though prepared, there was never any way to be ready.

PRAYER: Lord, sometimes the pain of life and loss can seem unbearable. You are a God of miracles, and I ask that you perform a miracle in my heart today. Heal me, ease my pain and sorrow. Help me to go on. You are the Source of rest and strength. I turn to You in Jesus' Name, Amen.

Peace,

Theresa

Finding Sleep In Our Heavenly Father's Arms

2008-10-22T07:30:00.000-07:00

Doesn't it warm your heart to see a little baby toddle toward the arms of their parent? Their parents' arms represent love, safety, acceptance, and rest. These are the arms that reach out when they are hurt, afraid, or tired. They rock them to sleep, they lift them with joy in the morning.

Sometimes we can feel exhausted by trying to meet all of the needs of our families. Many of us suffer from chronic sleep-deprivation. We seem to become accustomed to it, forgetting what a full night's sleep feels like. Perhaps today we can try to climb into the lap of our Lord and get some rest.

Our Heavenly Father wants to lift us into His loving arms and carry us. He longs to rock us to sleep at the end of our day, for we are his children.

PRAYER: Lord, I come to you today as Your child, as Your little girl.I know You have Your arms wrapped around me and my child. Thank You for reminding me to rest. Help me to find some time to be still, to close my eyes. Relieve me from the burden of fatigue this day. In Jesus' Name, Amen.

Love,

Theresa

"Forgiveness Is The Fragrance The Violet Sheds On The Heel That Has Crushed It" -- Mark Twain

2008-10-21T06:06:00.000-07:00

"Forgiveness is the fragrance the violet sheds on the heel that has crushed it" - Mark Twain

We all carry stories of people being cruel to our children, of treating them with prejudice, marginalizing them as outcasts. But none sting our mothers' hearts more than when these experiences come at the hands of our churches, our priests, our ministers, or other religious leaders.

Jesus' words on extending the supportive community of acceptance are crystal clear: "But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they can not repay you, you will be repaid at the resurrection of the righteous."

Parish priests, ministers, rabbis, and religious people are human. They are going to make mistakes and say things and do things they shouldn't. When this happens, we have two choices: we can speak up, or we can go away. Speaking up will not necessarily bring victory, and "going away" might feel more like defeat. Therefore, we must discern what the Lord wants us to do when we encounter these battles. When anointed by God, we can do all things through Him who strengthens us (Phil 4:13).

As children of God, we are going to be called to forgive our offenders. Forgiveness of those who have hurt our children does not justify what they did, and it does not undo it. But it is a commandment. God's Word says, "And when you stand praying, if you hold anything against anyone, forgive him, so that your Father in heaven may forgive you your sins" (Mark 11:25).

So let us not permit hurtful circumstances to take our precious energy, or sway us from a right relationship with God. We must put on the armor of the Lord as we go forward. With Him, we will be able to stand when the arrows are sent our way. He will protect us and our children in battle.

PRAYER: Father, I need your help today with forgiving those who have trespassed against my child. I want to forgive fully from my heart, and I ask You to forgive me for hurting others. Please heal the pain I carry from the arrows' onslaught. Heal all wounds, especially those of my offenders. Help us all to do Your Will. I pray all of this in Jesus' precious name. Amen.

Always,

Theresa

Below is an article about a priest, a church, a community and a special needs family who are in desperate need of our prayers. I do not know the details or the different sides to this story, but it looks like all parties are in need of healing.

PRIEST BANS AUTISTIC BOY FROM CHURCH; MOM TOLD SHE'D BE SENT TO JAIL IF SHE BROUGHT AUTISTIC SON TO CHURCH

A Catholic priest has filed a restraining order against the parents of a severely autistic 13-year-old boy in an effort to keep him from attending the church in Bertha on Sundays.

Church officials claim he is too disruptive.

The Rev. Daniel Walz alleges that Adam Race's unruly behavior endangers others who attend the Church of St. Joseph.

Race's parents have ignored the restraining order, calling it discriminatory, and Carol Race, Adam's mother, was cited by police and is due to appear in court on Monday for violating the order.

"He said that we did not discipline our son. He said that our son was physically out of control and a danger to everyone at church," Carol Race said. "I can't discipline him out of his autism, and I think that's what our priest is expecting."
Carol Race said it all started last June, when Walz and a church trustee visited the Races at their home address the behavior of Adam, who stands taller than six feet and weighs more than 225 pounds.

In an affidavit, Walz said the church "explored and offered many options for accommodations that would assist the family while protecting the safety of parishioners. The family refused those offers of accommodation."

Carol Race said the family of seven, which has attended St. Joseph since 1996, typically sat in the cry room or in the back pew to keep avoid disrupting the services and did not hear a complaint from the parishioners until Walz showed up at their home in June.

Even after the restraining order was served, the family continued going to the church and would leave during the closing hymn to avoid contact with others, Carol Race said.

The Diocese of St. Cloud issued a statement saying the petition was filed "as a last resort out of a growing concern for the safety of parishioners and other community members due to disruptive and violent behavior on the part of that child."
Walz said the boy's behavior worsened over time, telling authorities that Adam has been "extremely disruptive and dangerous" since last summer.

According to Walz, Adam struck a child during mass, nearly knocks elderly parishioners over when he hastily exits the church, spits and sometimes urinates in church and fights when he is being restrained.

He also one time assaulted a girl by pulling her onto his lap and, during Easter mass, ran to the parking lot and got into two vehicles, starting them and revving the engine, Walz alleged.

"There were people directly in front of the car who could have been injured or killed if he had put the car in gear," Walz wrote.

Adam's parents have to sit on him and sometimes tie his hands and feet to get control of him, Walz wrote.

Carol Race has an answer to each complaint.

She said her son makes spitting faces but doesn't spit and acknowledged he has occasional problems with incontinence. She says that she and her husband sit on Adam because their weight calms him down, which is why he pulled the girl onto him.
She also said they do use soft straps to bind Adam's hands and feet on occasion because it calms him, as does the revving sound of engines, which is why he started the cars.

Some disability advocates are getting behind the Races.

"It's unfathomable and concerns me that we've taken a situation with special needs and we're making it into the criminal matter," said Brad Trahan, the founder of the RT Autism Awareness Foundation in Rochester, who has asked the bishop of St. Cloud to rescind the restraining order.

Carol Race just hopes the ugly back-and-forth doesn't tarnish the image of the church.

"The church isn't bad," she said. "But it's what some individuals do within the church."

(Copyright 2008 by The Associated Press. All Rights Reserved.)

And Jesus Wept

2008-10-20T07:03:00.000-07:00

Jesus Wept (John 11:35).

There are few things more profound to me than the meaning in this verse. Jesus had arrived at the tomb of His good friend, Lazarus. He knew of the accusations that He could have saved him. He saw the grieving of His close friends Mary and Martha. He knew what He was about to do. And Jesus stood at the foot of the tomb of Lazarus, and He wept.

The Lord stood openly and He wept.

There are, and will be, moments in our lives when we cry. Rain falls into every life, some more than others. We cannot control and manage every aspect of our lives or the lives of our children. We are human. And we are not the first mothers to weep. Rachel and the women of her time wept over the children of Israel who were taken away as slaves (Matt 2:13-18). Rachel refused to be comforted. The Bible never told us that she was acting badly or should have been accepting of comfort. She was permitted to cry, to grieve, and to mourn.

Jesus demonstrated to us at the tomb of Lazarus that we need not run from our tears. For do they not come from the same place that loves, accepts, supports, and advocates for our children?

That which is tender enough to love, is tender enough to cry.

PRAYER: Lord, help me remember that You are holding me when I cry, and that it is healthy to give voice to my feelings. I thank You for Your tender compassion and love. It is only in my own ease with human feelings that I may truly share Your Love and Mercy with others.

Always,

Theresa

Shining the Light in Public

2008-10-17T09:04:00.000-07:00

Special needs moms often become witnesses to the injustice and suffering imposed upon the marginalized and persons with disabilities in our society, just by living our everyday lives. A simple trip to the grocery store, or trying to access a locker room at the "Y" can require us to suddenly become an activist or a messenger of God's compassion and change in the face of scorn.

But struggle and conflict are elements of human life. We will all have pain, we will all have loss. In knowing God, and through the grace of God, we are given the strength to endure. When our heads bow in despair, we must remember that there is One who shall gather us in His arms and lift our chins and dry our tears.

God will also send us "angels on earth" to help us just when we seem to need them most. These angels may be in the form of doctors, nurses, friends, or strangers. They are God's reminder to us that He is with us, and His hand is on our shoulder.

Though not a political blog, the link below (a report on MSNBC's Nightly News) is for me, a heartwarming public reminder that we are not alone upon this road we walk.

PRAYER: Thank you, Lord, for Your "angels on earth", the people you send into my life who remind me of Your loving mercy. Bless these people as they reach out and show me Your love when I am in need. I pray that I too, may bring Your love to my family, my friends, and to this hurting world.

In His Peace,

Theresa

http://michellemalkin.com/2008/10/16/your-spirit-lifter-of-the-day/

God Sees The Big Picture

2008-10-16T19:53:00.000-07:00

I believe the life of a special needs mother can be compared to riding a roller coaster. There are upswings of great joy and relief, and sudden, unexpected drops into grief and sorrow. We have struggles and challenges in our lives that most mothers would never dream of. Our road is different.

But being different does not mean it is a mistake -- God doesn't make mistakes. He doesn't look at our children and the challenges they are facing and wring His hands. There is no Heavenly panic over our little ones. They are perfectly and wonderfully made.

And we as mothers of children with special needs are no surprise to God. In fact, we have been specially chosen to be their mothers. When we are feeling weak or incompetent, we must hold on to the knowledge that He has equipped us with the strength and grace to meet the challenges of our lives. Even when we feel we are faltering, we are never beyond His reach.

Our children are made in the image of God. So are we. He holds us all in the palm of His hand. He sees, and we are never alone.

PRAYER: Lord, though I may not understand the path You have set before me, I trust You to lead me. Watch over me and my child this day. Help us to remember that You are always beside us, and fill me with Your Spirit. Amen.

Your Sister in Christ,
Theresa

I have learned and learned again that I must surrender -- to yield, but not capitulate -- to the path that has been laid out before me.